AiArthritis Voices 360 Podcast

AiArthritis diseases can be difficult enough to manage—but what happens when the symptoms don't fit neatly into a diagnosis? In this episode, AiArthritis Health Education Manager Leila shares her perspective on the “mystery patient” experience, those living with serious, ongoing symptoms but still searching for answers. Leila revisits key conversations from past episodes and introduces new resources, including our updated Mystery Patient Guide and the AUTO + Inflammatory Arthritis = X or YZ Project, which explores lesser-known or overlapping conditions like IgG4-related disease (IgG4-RD). She also shares the powerful story of a real mystery patient navigating the challenges of being undiagnosed for years. If you or someone you love is living in diagnostic limbo, this episode offers validation, education, and practical tools to help guide your journey and highlights why improving awareness and research for this often-overlooked community is so essential. Donate to Support the Show: www.aiarthritis.org/donate Episode Highlights: Learn why some patients remain undiagnosed for years and what defines a “mystery patient.” Hear a real patient story that illustrates the challenges of navigating misdiagnosis. Understand how overlapping conditions like IgG4-RD complicate the diagnostic process. Discover key takeaways from the IgG4-RD Educational Summit, including treatment updates. Explore tools and resources available to support those still searching for answers.   Links & Resources Mystery Patient Guide: www.aiarthritis.org/undiagnosed Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp IgG4-RD Resource :https://igg4ward.org/education-and-resources Start Your Team for World AiArthritis Day: givebutter.com/aiarthritisday25  World AiArthritis Day Information: www.aiarthritis.org/aiarthritisday   Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   Connect with our Cohost: Leila P.L. Valete is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus & Sjögren's. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @Lupus.Lifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others.   Connect with Leila: Tiktok: @Lupus.lifestyle.lei

Autoimmune diseases like lupus and Sjogren's disease are often associated with joint pain, fatigue, and organ involvement, but their impact on the nervous system is less commonly discussed. In this episode, Dr. Julius Birnbaum, a leading expert in neuro-rheumatology, joins us to explore the neurological manifestations of these conditions and what patients need to know. From brain fog and memory issues to more severe complications like neuropathy, Dr. Birnbaum explains how these diseases affect the brain and nerves, why symptoms can be challenging to diagnose, and the latest advancements in treatment. If you or a loved one live with lupus or Sjogren's and have experienced unexplained neurological symptoms, this episode provides clarity, validation, and expert insights on what to look for and how to advocate for proper care.   Donate to Support the Show: www.aiarthritis.org/donate   Episode Highlights: Understanding the link between autoimmune diseases and the nervous system. Common neurological symptoms in lupus and Sjogren's Why neurological symptoms are often overlooked or misdiagnosed. The latest research and treatment approaches for managing neurological complications. How to advocate for proper testing and care if you suspect neurological involvement.   Links & Resources Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp   Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   Connect with our Cohost & Guest: Dr. Julius Birnbaum is a distinguished rheumatologist with 20 years of experience and the only physician in the U.S. trained as an internist, neurologist, and rheumatologist. He completed his medical training at Columbia, Mount Sinai, Jacobi Medical Center, and Johns Hopkins, where he later pioneered a Neuro-Rheumatology Clinic to treat complex neurological complications of autoimmune diseases. Dr. Birnbaum has authored over 30 publications in prestigious medical journals and has been a featured speaker at national and international rheumatology conferences. Currently, he serves as Associate Professor of Rheumatology at the University of Pittsburgh Medical Center (UPMC) and Division Chief of Rheumatology at UPMC Mercy Hospital, where he continues to teach and mentor medical trainees. Outside of medicine, he enjoys sports like basketball, swimming, and running, which he shares with his wife and three children in Wexford, Pennsylvania.   Connect with Dr. Birnbaum: Book: Living Well With Autoimmune Diseases: A Rheumatologist's Guide to Taking Charge of Your Health - https://bit.ly/41XrpZR Website: https://www.juliusbirnbaum.com/   Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus and Sjögren's disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them.    Connect with Leila: Tiktok: @Lupuslifestyle.lei  

Parenting is challenging, but adding a chronic illness like rheumatoid arthritis brings unique obstacles. In this episode, co-host Eileen shares her journey of raising a child while managing RA, from coping with fatigue and pain to adjusting expectations. She's joined by her 12-year-old son, Jacob, who offers his perspective on growing up with a parent who has a chronic illness. Together, they discuss the struggles, unexpected lessons, and ways they support each other. Whether you're a parent navigating chronic illness or looking to understand its impact on families, this episode offers insight, advice, and encouragement. Donate to Support the Show: www.aiarthritis.org/donate Episode Highlights: Eileen shares her journey of parenting with RA, from early diagnosis to raising a preteen. The biggest struggles of parenting with chronic illness, including fatigue, guilt, and daily challenges. Jacob's perspective on having a parent with RA and how it has shaped his life. The unexpected positives—how chronic illness has taught Jacob responsibility, independence, and empathy. Practical tips for parents with chronic illness, including self-care, communication, and asking for help. Links & Resources Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp   Connect with our Cohost: Eileen Davidson is a rheumatoid arthritis patient advocate from Vancouver Canada. She volunteers with the Arthritis Research Canada patient advisory board and the Canadian Institute of Health Research - Institute of Musculoskeletal Health and Arthritis patient engagement research ambassador, among others. When not advocating she is writing about her experience with arthritis through Creaky Joints, Healthline, Chronic Eileen or can be found being a mom to her son Jacob.   Connect with Eileen: Twitter: @ChronicEileen   Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE    

What does it mean to be diagnosed with undifferentiated disease (UD)? In this episode, Tiffany Westrich-Robertson, AiArthritis CEO and founder, unpacks this complex diagnosis, sharing her personal journey from being a mystery patient to receiving a UCTD diagnosis. Tiffany explains how undifferentiated disease fits into the autoimmune.autoinflammatory spectrum, its implications for treatment, and why early intervention is critical. Join us on this episode to explore what undifferentiated disease means, how early treatment can improve outcomes, and the latest research shaping diagnosis and care. Tell us YOUR undifferentiated disease story: https://bit.ly/3EfuWsT Check out our social media channels for posts about UD and weigh in Sign up for our AiArthritis Research Database, where we are studying UD at www.aiarthritis.org/database Donate to Support the Show: www.aiarthritis.org/donate Episode Highlights: Learn more about undifferentiated disease, including why it's so important to know it can be the final diagnosis OR it could branch off to a “full blown” autoimmune or autoinflammatory disease, including one of ours that include inflammatory arthritis as a major clinical component. Either way, UD IS a real diagnosis. Explore the connection between undiagnosed “mystery patients”, an undifferentiated diagnosis, and how UCTD and other undifferentiated conditions fit into the spectrum of autoimmune and autoinflammatory diseases. Understand the importance of early intervention and how it can lead to remission and improved outcomes. Discover the role of biomarkers, precision medicine, and risk stratification in guiding treatment plans. Hear how AiArthritis is advancing research and offering resources to help patients navigate undifferentiated disease.   Links & Resources Explore more from the “Go With Us to Conferences” program: www.aiarthritis.org/conferences Early Symptoms of AiArthritis Study: https://www.aiarthritis.org/Early-Symptoms-Study Go With Us to EULAR 2023 - Ig-G4, UCTD, RMDs and the Brain: https://www.youtube.com/watch?v=1w2Ouk-ItFk&t=264s Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp   Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE

Join us for a special episode where we reflect on the top three most-listened episodes of 2024! Leila revisits these engaging conversations that resonated deeply with the AiArthritis community, covering mental health, navigating the patient journey, and reproductive health. These episodes highlight the challenges and triumphs of living with autoimmune diseases, offering practical strategies and heartfelt support. Whether you're a patient, caregiver, or ally, this roundup of impactful discussions provides valuable insights and inspiration to carry into 2025. Donate to Support the Show: www.aiarthritis.org/donate Episode Highlights: Mental Health and Autoimmune Diseases: Explore how autoimmune diseases impact mental health for patients and caregivers, including strategies to manage stress, anxiety, and emotional challenges. Discover practical self-care techniques, mindfulness practices, and tools to promote emotional resilience. Navigating the Patient Journey: Learn about the Patient Journey resource, designed to help individuals navigate every stage of their autoimmune disease experience, from diagnosis to remission. Find guidance on managing symptoms, communicating with healthcare providers, and accessing support networks. Reproductive Health and Autoimmune Diseases: Gain insights into how autoimmune diseases can affect reproductive health, including safe birth control options and the impact of medications on fertility. Learn about resources and expert advice for planning pregnancies and managing reproductive challenges. Links & Resources Explore more from the “Go With Us to Conferences” program: www.aiarthritis.org/conferences Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp   Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE

In this episode, our co-hosts share key takeaways and important updates from the American College of Rheumatology (ACR) Convergence 2024. Leila, Tiffany, Cristina, and Deb discuss cutting-edge therapies, chronic pain management strategies, and groundbreaking research on conditions like lupus, Sjögren's, and psoriatic arthritis. Join us for an insightful and empowering conversation that highlights the strides being made in the AiArthritis community.   Donate to Support the Show: https://www.aiarthritis.org/donate  Episode Highlights Discover how innovative CAR-T treatments are paving the way for remission breakthroughs in autoimmune diseases. Learn surprising insights about how obesity influences inflammation and disease progression. Get practical strategies from Stanford's renowned self-management program to take control of your pain. Explore cutting-edge imaging techniques and therapies that offer new hope for early diagnosis and better care. Find out how menopause impacts autoimmune patients and the tools available to navigate this life stage.   Links & Resources Explore more from the “Go With Us to Conferences” program: www.aiarthritis.org/conferences Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp   Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE

In this episode, co-hosts Leila and Brittany dive into the power of patient voices in transforming the healthcare experience for the AiArthritis community. They bring empathy and validation to stories submitted by listeners, highlighting real struggles with insurance, pharmacy issues, and the emotional toll of chronic illness. Brittany also shares key takeaways from the recent Autoimmune Community Summit, covering practical tips for self-management, understanding the influence of environmental factors, and the importance of owning and sharing your story to drive change. This episode is packed with relatable stories, actionable advice, and encouragement for anyone navigating autoimmune challenges. Tune in for new ways to elevate your voice and join a supportive community that understands. Episode Highlights Leila and Brittany discuss the impact of elevating patient voices in the AiArthritis community. Patient-submitted stories reveal real challenges with insurance, pharmacy issues, and living with chronic illness. Key insights from the Autoimmune Community Summit highlight the importance of self-management and environmental factors. Tips on using personal stories in healthcare advocacy help patients drive meaningful change. AiArthritis's "WTHellth" project aims to address systemic barriers in healthcare. The hosts share tools like communication aids and advocacy programs for patient empowerment.   Links & Resources Submit Your Story or Rant: aiarthritis.org/rant Patient Journey Resources: aiarthritis.org/patientjourney Advocacy Program Information: aiarthritis.org/advocacy Communication Aid for JIA Patients: aiarthritis.org/JIAcommunication Follow Our Conference Coverage: aiarthritis.org/conferences Read Our Blog for Patient Perspectives: aiarthritis.org/blog Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp Donate to Support the Show: https://www.aiarthritis.org/donate  Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   Connect with our Co-Hosts:   Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus and Sjögren's disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them.    Connect with Leila: Tiktok: @Lupuslifestyle.lei   Brittany Murray is a dedicated AiArthritis volunteer who has been living with Psoriatic disease for over 30 years. She loves to share her story to help others with AiArthritis diseases and to assist with advocacy and education work around hot topics like prior authorization and step therapy. She also started a blog and social community called ChronicDiseaseDiary to build a community of empowerment, love and support for those with chronic diseases or caretakers of those with chronic diseases.    Connect with Brittany: ChronicDiseaseDiary

In this episode of AiArthritis Voices 360, co-hosts Leila and Eileen discuss a project focused on organizing essential resources for patients navigating the AiArthritis journey, from undiagnosed symptoms to remission. They share their personal experiences living with lupus and rheumatoid arthritis, exploring the complexities of managing chronic illness and the challenges of early diagnosis. Tune in to learn about AiArthritis's new online social community and how you can contribute your story and help develop more resources for patients. This episode is perfect for patients and caregivers seeking guidance and support on their health journey.   Share your ideas on resources that we can add to the patient journey by emailing us at info@aiarthritis.org, submit your patient story on each different section of the patient journey and join our online social community! Episode Highlights A breakdown of the six stages of the patient journey and how resources are organized. Personal stories from Leila and Eileen on living with AiArthritis diseases. The importance of early diagnosis and how it affects long-term outcomes. Strategies for caregiver support and understanding comorbidities. Learn how to contribute your story or join the new AiArthritis social community. Resources & Links: Check out our patient resources: www.aiarthritis.org/patientjourney Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp Donate to Support the Show: https://www.aiarthritis.org/donate  Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE     Connect with our Co-Hosts:   Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus and Sjögren's disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them.    Connect with Leila: Tiktok: @Lupuslifestyle.lei   Eileen is a rheumatoid arthritis patient advocate from Vancouver Canada. She volunteers with the Arthritis Research Canada patient advisory board and the Canadian Institute of Health Research - Institute of Musculoskeletal Health and Arthritis patient engagement research ambassador, among others. When not advocating she is writing about her experience with arthritis through Creaky Joints, Healthline, Chronic Eileen or can be found being a mom to her son Jacob.   Connect with Eileen: ChronicEileen

In this episode, our co-hosts bring you an exclusive look into the AiArthritis “Go With Us!” to Conferences program. We dive deep into EULAR 2024, the European Rheumatology Research Conference, where patients and co-hosts reveal groundbreaking advancements in AiArthritis research. Discover the latest on CAR-T therapy, innovative pain management tailored for patients, the role of opioids in addressing pain and fatigue, and practical strategies for battling brain fog. Gain valuable insights and practical advice from fellow patients and experts. Don't miss this episode packed with cutting-edge information!   If you're eager for more, join us for our next journey to the ACR conference in November. Visit AiArthritis.org/conferences for more details and to sign up! Episode Highlights Overview of the Go With Us to Conferences program, which allows patients to virtually join and learn from major rheumatology conferences like EULAR and ACR.  Tiffany, CEO and person living with non-radiographic axial spondyloarthritis, discusses CAR-T therapy and its potential to achieve remission in autoimmune diseases, particularly in lupus patients. Deb, AiArthritis volunteer and person living with rheumatoid arthritis, presents on patient-tailored pain management, emphasizing multi-dimensional approaches to address different types of pain. Becky, AiArthritis volunteer and person living with Sjogren's Disease, explores the relationship between fatigue, pain, and opioids, highlighting the challenges of treating these symptoms in autoimmune patients. Leila, AiArthritis Health Education Manager and person living with Lupus Nephritis and Sjogren's Disease, covers cognitive dysfunction (brain fog), offering strategies for managing this common but under-discussed symptom in autoimmune diseases. Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp Donate to Support the Show: https://www.aiarthritis.org/donate  Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   Resources & Links: Join the Go With Us Program for ACR in November: https://aiarthritis.org/conferences Connect with our Co-Hosts: Tiffany is the CEO at AiArthritis (International Foundation for Autoimmune & Autoinflammatory Arthritis) and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.   Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren's Syndrome. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them.    Deb Constien is a medically retired Registered Dietitian and a Representative for AiArthritis with Rheumatoid Arthritis. Deb is also on the Advisory Council for WREN- Wisconsin Research Education Network and a Patient Family Advisor- PFA on an International PCORI research study for ACP- Advanced Care Planning.   Becky Hosey is an AiArthritis volunteer, a healthcare professional, and also a person living with Sjogren's disease.

Welcome to a milestone episode of AiArthritis Voices 360 Talk Show! Join us as we celebrate our 100th episode by revisiting three of our most impactful discussions that have resonated deeply with our listeners. Episode 73: "Arthritis" Awareness - It's Complicated! Dive into the complexities of arthritis awareness with our co-hosts as they share personal stories of delayed diagnosis and the profound impact it had on their lives. Discover why education and awareness for AiArthritis diseases are crucial in transforming patient journeys. Episode 80/81: RheumyRounds: The Good, The Bad, and The Ugly - Improving Office Visit Communication In this dynamic episode, our co-hosts are joined by Dr. Al Kim, a renowned rheumatologist, to explore the intricacies of patient-doctor communication and how it can be improved. Learn about the key elements that can enhance patient care, streamline diagnosis, and ensure appropriate treatment through effective communication strategies. Episode 90: Why Won't They Diagnose Me? Uncover the mystery patient stories shared by our co-hosts, highlighting the struggles of obtaining a proper diagnosis. This episode emphasizes the importance of access to information and relatable experiences in navigating the often complex diagnostic journey. Join us in this special 100th episode as we reflect on these powerful stories and discussions. Gain valuable insights into the significance of education, awareness, and research in the AiArthritis community. Don't miss out on this celebratory highlight reel that underscores the essential aspects of improving lives through informed conversations. Tune in and be part of the journey! And if you want to help this talk show expand to reach more people in the AiArthritis community, please donate to support us here :  https://www.aiarthritis.org/donate  Episode Highlights We revisit 3 of the most popular episode of the talk show to highlight important topics for the AiArthritis community Cohosts share their stories of delayed diagnosis and the importance of education and awareness to receive proper treatment earlier Dr. Al Kim shares about how patient-doctor communication can be improved from both the physician and patient sides.  Cohosts share stories of being a mystery patients to shed light on the diagnosis journey and help others navigate its complexities Learn how to be a part of the show and share your story!  Resources & Links: Share Your Rant Story: https://www.aiarthritis.org/rant Submit your Doctor Visit Story: https://www.aiarthritis.org/gbu Find Juvenile Communication Information Aids: https://www.aiarthritis.org/jiacommunication Submit Your Mystery Patient Story: https://forms.gle/mnM5FeS6LsLvFSiY7 Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp Donate to Support the Show: https://www.aiarthritis.org/donate    Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot! 

In this episode, co-hosts Charis Hill and Jae Walker delve into life after COVID-19, focusing on the unique challenges faced by individuals with AiArthritis diseases. They discuss the importance of continued precautions in healthcare settings, share their own personal experiences, and offer practical advice for staying safe. Tune in for an insightful conversation on navigating the ongoing reality of COVID-19 while managing chronic illnesses. Episode Highlights Understanding the ongoing complexities of COVID-19 for immunocompromised individuals and those on immune-suppressing medications. Jae and Charis share their journey living with chronic disease, their experience with COVID-19 and managing COVID prevention now. Discussion on recent public health recommendations and the importance of wearing masks, social distancing, and testing. Addressing the need for safe healthcare environments and advocating for better protections for high-risk patients. Encouraging listeners to resume mask-wearing, improve air quality, and initiate conversations with healthcare providers about safety measures. Join us for this episode to gain valuable insights and actionable steps to protect yourself and others in the AiArthritis community. Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp Donate to Support the Show: https://www.aiarthritis.org/donate  Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE Resources & Links: Jae's blog - When I Had Co-Vid: https://creakyjoints.org/living-with-arthritis/coronavirus/patient-perspectives/when-i-had-covid/ COVID Keeps Rising in Bay Area Wastewater. What to Know, From New Variants to Symptoms: https://www.kqed.org/news/11987343/covid-bay-area-wastewater-variant-symptoms-isolation-guidance CDC “People with certain medical conditions” page: https://www.cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-medical-conditions.html CDC page “How to protect yourself and others” https://www.cdc.gov/coronavirus/2019-ncov/prevent-getting-sick/prevention.html People's CDC resource page for requesting COVID healthcare reasonable accommodations: https://peoplescdc.org/2023/05/09/ada-rights-workshop/     Connect with our Co-Hosts:   Charis Hill, who uses they/them pronouns, is a disability activist, writer, speaker, and model living with conditions such as Axial Spondyloarthritis and Ehlers Danlos Syndrome. They use narrative engagement to advance social justice for multiply-marginalized disabled people and have been featured internationally in media and the documentary "Becoming Incurable." Charis has written for HealthCentral, Healthline, and Business Insider, and has been recognized by the Arthritis Foundation and Spondylitis Association of America for their advocacy work.   Connect with Charis: Twitter: @beingcharisblog  Tikok : @beingcharisblog Facebook: @beingcharis Jae Walker, who uses they/them pronouns, is a blogger, writer and artists living with conditions such as rheumatoid arthritis, Sjogren's, and small Fiber Polyneuropathy Hypothyroidism. They are an advocate and artist sharing artwork around chronic fatigue, chronic illness, and pain from the patient perspective.    Connect with Jae: Threads: @JaelehWalker  Instagram : @UnexpectedAdvocate Facebook: @UnexpectedAdvocate   AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot! 

In this episode, our co-hosts Estela and Juana delve deep into the often overlooked but critically important topic of mental health for those living with AiArthritis diseases. They discuss the significant impact these health challenges have on both the body and the mind, supported by eye-opening statistics that 52% of patients with autoimmune diseases are diagnosed with a mental health condition within a year. Tune in to hear Estela and Juana break down the science behind these connections, share their personal experiences and provide practical strategies to manage mental health while navigating life with AiArthritis diseases.   Episode Highlights:  Defining AiArthritis diseases and their comprehensive impact on mental health Discussion on the challenges of living with unpredictable flares Juana's personal experience with rheumatoid arthritis and lupus and their impact on her mental health Importance of self-care strategies such as rest, nutrition, exercise, and mindfulness techniques. Benefits of therapy, counseling, and connecting with social support groups. Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp Donate to Support the Show: https://www.aiarthritis.org/donate  Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   Connect with our Co-Hosts: Estela is the President and co-founder of Looms for Lupus, a nonprofit providing advocacy and support for those affected by Lupus, Fibromyalgia, and mental health issues. With over 30 years in healthcare, she currently supports private practices with electronic medical records and office workflows. Estela co-founded Looms for Lupus in 2011 after her sister's near-fatal battle with Lupus and Immune Thrombocytopenia, channeling her passion into empowering and supporting the community. She collaborates with initiatives to increase diversity in clinical trials and advocates both locally and nationally.   Connect with Estela: Facebook:@estelamata @looms4lupus Instagram: @estela_mata @looms4lupus Twitter: @estelamata @looms4lupus LinkedIn: @Estela Mata-Carcamo Website: www.looms4lupus.org   Juana is the co-founder of Looms for Lupus, a nonprofit supporting Lupus survivors, their families, and caregivers. Diagnosed with Rheumatoid Arthritis and Lupus in 2009, she facilitates bilingual support groups and advocates nationally for Lupus, Fibromyalgia, and Mental Health. Juana has served as a patient advisor, consumer advocate, and is a member of several advisory councils and task forces. Professionally, she is a Children's Social Worker for the Los Angeles Department of Children and Family Services.   Connect with Juana: Facebook: Juana Mata Instagram: @juany_mata Twitter: @Matajuanamata LinkedIn: Juana Mata   AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot! 

In this episode, Leila shares the exciting plans for the upcoming World AiArthritis Day on May 20th with AiArthritis. Delve into why raising awareness for AiArthritis diseases is crucial and discover ways you can actively participate on the global initiative. Through flashback segments, our co-hosts dissect the layers surrounding the term "arthritis," unraveling misunderstandings, family judgments, and the complexities of distinguishing AiArthritis from other conditions. Tune in for insightful discussions on diagnosis delays, access to treatments, fostering better health outcomes and how you can be a part of World AiArthritis Day!  Episode Highlights:  AiArthritis plans for World AiArthritis Day on May 20th How listeners can actively engage in the global initiative Common Misunderstandings of Arthritis  Significance of raising awareness for AiArthritis diseases and the complexities of distinguishing AiArthritis from other conditions. Patient insights into diagnosis delays and the effects on treatment plans.   Interested in getting involved? https://www.aiarthritis.org/aiarthritisday https://twitter.com/aiarthritisday https://www.instagram.com/worldaiarthritisday https://www.facebook.com/AiArthritisDay Fundraiser: https://givebutter.com/AiArthritisWAiAD24 Race-a-Thon: https://www.facebook.com/events/1511735302713694/   Donate to Support the Show: https://www.aiarthritis.org/donate  Follow AiArthritis on all social media platforms @IFAiArthritis Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   Connect with our Co-Hosts:   Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren's Disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @Lupus.Lifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.   Connect with Leila:     Instagram: @lupus.lifestyle.lei      TikTok: @lupus.lifestyle.lei   AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot!

In this episode, co-hosts Leila, Estela, and Kerry delve into the crucial topic of social wellness amidst living with AiArthritis disease. They explore the essence of social wellness, its significance and sharing personal insights on navigating social lives while managing health challenges. Join our co-hosts as they discuss both the supportive and challenging dynamics of maintaining an active social life with an AiArthritis disease and how online communities can positively impact social wellness. Drawing from community questions and experiences, they offer invaluable advice, practical tips, and thoughtful modifications to foster social fulfillment despite potential barriers. Tune in to learn how to prioritize social wellness in the face of chronic illness. Episode Highlights:  Definition and exploration of social wellness, emphasizing its importance in maintaining overall well-being. How social wellness can negatively and positively affect your AiArthritis disease  Discussion on the cohosts' personal experiences with their social lives and how they navigate social interactions while managing their health conditions. Insights into the reactions of family and friends to the cohosts' social needs, highlighting both supportive and challenging aspects. How you can utilize technology to connect to your community to positively impact your social life.  Answering community questions and comments regarding social wellness by sharing practical advice, tips, and modifications for fostering social fulfillment despite potential barriers.   Donate to Support the Show: https://www.aiarthritis.org/donate  Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   Connect with our Co-Hosts:   Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren's Disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @Lupus.Lifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.   Connect with Leila:     Instagram: @lupus.lifestyle.lei      TikTok: @lupus.lifestyle.lei   Kerry is a writer and patient advocate living with fibromyalgia, rheumatoid arthritis, sarcoidosis, Sjögren's syndrome, and small fiber neuropathy/dysautonomia (to name a few). As these conditions took their toll and she became less physically able, Kerry became empowered to use her voice to advocate for herself and for patients like her. She is currently working on "Kaleidoscope," a collection of rare disease stories.    Connect with Kerry:     Instagram: @buttahflyk      Twitter: @buttahflyk      Facebook: @floatlikeabuttahfly      Website: http://bit.ly/floatlikeabuttahfly     Estela Mata is the President and co-founder of Looms for Lupus, a non-profit organization that provides Lupus, Fibromyalgia and Mental Health Awareness, advocacy, and support to those living with these conditions, their loved ones, and caregivers.    Connect with Estela:        Instagram: @estela_mata @looms4lupus     LinkedIn: @Estela Mata-Carcamo     AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot!   

Curious about how volunteering with AiArthritis could transform your life and the lives of others?   In the latest episode of AiArthritis Voices 360 Talk Show as co-hosts Leila, Michael, Jenni, Deeanne, Patrice, and Deb share heartfelt stories of their journey into volunteering with AiArthritis. From personal experiences to the profound impact AiArthritis has had on their lives as patients, they delve into the transformative power of community support. Discover why volunteering is vital and how the AiArthritis community has become a lifeline, offering understanding, empathy, and empowerment.    Join the conversation and learn how you too can make a difference by getting involved with AiArthritis. Find out more here: https://www.aiarthritis.org/volunteer Episode Highlights:  Dive into the intriguing stories behind our volunteers' journey to AiArthritis. Hear how AiArthritis has reshaped lives and inspired resilience in our volunteers. Explore why volunteering is the key to driving progress for the AiArthritis organization and community. Discover the profound support and empowerment found within the AiArthritis community. Learn how you can make a difference and get involved with AiArthritis today.   Donate to Support the Show: https://www.aiarthritis.org/donate  Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   Connect with our Co-Hosts:   Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren's Disease. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @Lupus.Lifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.   Connect with Leila:     Instagram: @lupus.lifestyle.lei      TikTok: @lupus.lifestyle.lei   Jen  Connect with Jen:  Podcast : My Spoonie Sisters Instagram: @gracejully_jen       @my_spoonie_sisters     AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot!   

This is an AiArthritis Voices 360 REWIND, where we are bringing back the first RheumyRound episode from 2020 where we opened the conversation on improving doctor office visits! Also note - you will hear the acronym IFAA, which we used prior to using AiArthritis.   Join us as our co-hosts, Tiffany and Kelly, and guests, Dr. Kim and Jerik Leung, explore the important dynamic between patients and doctors in healthcare communication. Through insightful dialogue and shared experiences from both the patient and physician perspective, we uncover strategies to enhance mutual understanding, empowering patients to articulate their needs and doctors to listen attentively. Together, we champion the importance of empathy and effective communication in achieving accurate diagnoses and personalized treatment plans for those navigating AiArthritis diseases. Episode Highlights:  Do patients and rheumatologists' goals and expectations during an office visit align?  The significance of effective patient-doctor communication in managing AiArthritis diseases Strategies for patients to articulate their concerns and needs during office visits Techniques for doctors to actively listen and engage with patients to improve diagnostic accuracy Shared experiences and insights from both patients and doctors on navigating communication challenges How doctors can integrate social determinants of a patient's health in the clinical setting  Related Episodes: RheumyRounds: PART ONE The Good, The Bad, and The Ugly - Improving Office Visit Communication: https://www.aiarthritis.org/talkshow-ep80 RheumyRounds: PART TWO The Good, The Bad, & The Ugly - Improving Office Visit Communication : https://www.aiarthritis.org/talkshow-ep81   Donate to Support the Show: https://www.aiarthritis.org/donate  Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   Meet Our Host:   Tiffany is the CEO at AiArthritis (International Foundation for Autoimmune & Autoinflammatory Arthritis) and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.   Connect with Tiffany: Facebook: @tiffanyAiArthritis Twitter: @TiffWRobertson LinkedIn: @TiffanyWestrichRobertson   Kelly Conway is a speech-language pathologist, author/blogger, and a patient advocate.  She has been living with autoimmune arthritis since age 14 but wasn't formally diagnosed until age 32. That diagnosis has changed more than 5 times over the past 18 years. Through social media, she connected with fellow patients and cofounded the International Foundation for Autoimmune and Autoinflammatory arthritis. Kelly believes in the power of the patient voice and sharing our stories to raise awareness, education, and advocacy.   Connect with Kelly: Blog: www.asmyjointsturn.com.     Meet our Guests:    Dr. Kim is an Assistant Professor of Medicine and of Pathology & Immunology at Washington University School of Medicine. He also founded and directs the Washington University Lupus Clinic. Dr. Kim's research group is focused on addressing the unmet needs of human systemic lupus erythematosus (SLE), including understanding and leveraging the biomarker potential of complement activation products, testing novel noninvasive imaging platforms such as photo acoustics to detect lupus nephritis, understanding the relationship between sleep quality and lupus activity, and restoring eroded social support in patients with SLE.   Connect with Dr. Al Kim Instagram: @washulupusclinic Twitter : @AlHKim   Jerik Leung doctoral student and Woodruff Fellow in the Behavioral, Social, and Health Education Sciences department at Emory University. His current research interests involve characterizing pathways linking structural social determinants of health with individual health outcomes in chronic disease. He is specifically interested in how structural factors shape how people living with chronic disease manage their conditions, interact with their health care providers, access care, and engage with their communities. Jerik is currently working with faculty advisor Dr. Cam Escoffery to evaluate the implementation of several epilepsy self-management programs. For his dissertation research, he intends to focus on issues relevant to people living with lupus.   AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot! 

Welcome to AiArthritis Voices 360! In this episode, Leila, the Health Education Manager at AiArthritis, delves into the impact of AiArthritis diseases on reproductive health, sharing insights from the RNS and ACR 2023 conferences. Leila delves into the myriad challenges individuals encounter, including delayed puberty, heightened disease activity during menstrual cycles, and the heightened risks associated with unplanned pregnancies. Navigating the intricate landscape of family planning within the AiArthritis community, we discuss the significance of birth control methods and the impact of medications on fertility.   Drawing from personal experience with lupus, Leila discusses preserving fertility, assisted reproductive technologies, and navigating family planning. Join us on this episode to learn more about reproductive health with AiArthritis diseases and hear Leila's personal experience with family planning!    If you have questions or would like to share your own family planning story, please feel free to email Leila at Leila@AiArthritis.org. Episode Highlights:  Explore the latest research insights on how AiArthritis diseases affect reproduction from the RNS and ACR 2023 conferences. Join Leila on a personal journey, navigating reproductive health with Lupus. Uncover challenges in family planning, from medication impacts to the significance of birth control in AiArthritis. Learn about medication effects on fertility and preservation strategies for those with AiArthritis.   Resources & Links: https://mothertobaby.org/ http://lupuspregnancy.org/ https://www.mamasfacingforward.com/ https://www.graceandable.com/pages/chilliredcompressionglove RNS Go With Us video about Lupus and Pregnancy: https://youtu.be/tgeIW0pxF8M?feature=shared ACR Go With Us video about Reproductive Health: https://youtu.be/rYGs1fevQWU?feature=shared   Related Episodes: Ep 11: Oh Mama! Pregnancy Planning with a Chronic Illness : https://www.aiarthritis.org/talkshow-ep11 Ep 51: Oh Mama! Physical and Emotional Support Postpartum : https://www.aiarthritis.org/talkshow-ep51 Ep 89: Surgery with an AiArthritis Disease : https://www.aiarthritis.org/talkshow-ep89  Meet Our Host:   Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren's Syndrome. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @LupusLifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.   Connect with Leila:     Instagram: @lupus.lifestyle.lei      LinkedIn: www.linkedin.com/in/leila-lagandaon       Facebook: @leilaaiarthritis      TikTok: @lupus.lifestyle.lei   Donate to Support the Show: https://www.aiarthritis.org/donate  Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot! 

This episode is a 360it revisiting the topics put on the table during Episode 88 : Biosimilars - Interchangeability & Switching 2023   Join us in this breakout 360it from Episode 88 Biosimilars : Interchangeability & Switching 2023 as we dissect the Inflation Reduction Act (IRA) and its potential fallout on patient access to diverse treatment plans. Tracing the historical trajectory of the IRA, we uncover its role in price negotiations and the concerning shift in investments away from critical drugs tailored for specific diseases. This reallocation poses a tangible threat to the availability and diversity of treatments, including for those living with AiArthritis diseases. As we dive into the landscape of healthcare policy, the discussion emphasizes the pressing need for IRA improvements to consider the long term well-being of patients. Without these crucial enhancements, we will have a future with not only fewer innovative treatments but potentially less treatment options available.    Join us in fighting for improvements to the IRA and patient involvement in treatment access.   Episode Highlights :  The history of Medicare Part D and its positive impact on healthcare What is the Inflation Reduction Act Why the IRA price negotiations are important to understand and how it will affect your treatment access  How healthcare R&D will be negatively impacted by the IRA price negotiations  Consequences to Patients of Drug Price-Setting Policies for patients How can patients get involved in the IRA price negotiations  How the IRA will disincentivize small molecule drugs and indications for treatment plans    Resources Mentioned In This Episode: AiArthritis Biosimilars Hotline: https://www.aiarthritis.org/biosimilars  EMA - What Is A Biosimilar : https://www.ema.europa.eu/en/human-regulatory/overview/biosimilar-medicines-overview ASBM Statement on CMS drugs list announcement - https://safebiologics.org/medicare-price-negotiations-will-jeopardize-patient-access-to-new-medicines-result-in-worse-health-outcomes/ ASBM webinar on IRA - https://safebiologics.org/july-26-webinar-on-ira-medicare-price-negotiations/ An educational microsite for patients to learn more and read news articles -  www.IRAPatientInfo.org    Meet Our Co-Hosts & Guests:  Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues. Connect with Tiffany: Facebook: @tiffanyAiArthritis Twitter: @TiffWRobertson LinkedIn: @TiffanyWestrichRobertson   Andrew Spiegel has nearly two decades of experience in the patient advocacy arena. Spiegel co-founded the Colorectal Cancer Alliance and was longtime board member of the Alliance became CEO in January of 2008 and ran the CCA for nearly 5 years, before undertaking his next venture, the Global Colon Cancer Association (GCCA).In addition to his work in the colon cancer community, Spiegel is an active advocate for health care policies both in the US and now worldwide. He is a co-founder and currently serves on the steering committee of the Alliance for Safe Biologic Medicines (ASBM). He is on the Board of Directors, and in December 2014 was elected to Chair, of the Digestive Disease National Coalition (DDNC),a founding member of the Coalition to Increase Clinical Trial Participation and in May of 2016 he began a three year term as a member of the Board of Directors of the International Alliance of Patient Organizations (IAPO) where he chaired the fundraising committee. Spiegel has won multiple awards for his work in patient advocacy.   Michael Reilly, Executive Director of Alliance for Safe Biologic Medicines, has served as the executive director of ASBM since its inception in 2010. He has more than a decade of experience in the federal government developing and implementing healthcare policy. Mr. Reilly served as the associate deputy secretary at the U.S. Department of Health and Human Services (HHS) from 2005-2008 responsible for policy development and implementation, as well as regulatory oversight for issues involving CMS and the FDA. In addition to serving as the associate deputy secretary, Mr. Reilly served as a senior advisor to the assistant secretary for public affairs and the assistant secretary for planning and evaluation at HHS from 2002-2005. Mr. Reilly has been quoted in a series of FDA publications and co-authored many articles on biosimilars for the Generics and Biosimilars Initiative Journal. He has also presented to health regulators worldwide, including the Australian TGA, Health Canada and the World Health Organization (WHO).   Charles M Clapton. Mr Clapton has nearly two decades of Capitol Hill experience, Notably, he served as health policy director for the Senate Committee on Health, Education, Labor, and Pensions, aiding the passage of the FDA Safety and Innovation Act (2012). He also played a pivotal role as a lead Republican staffer during the Affordable Care Act's congressional deliberations. He also impacted the House Ways & Means and Energy & Commerce Committees by shaping Medicare Part D prescription drug benefits, revise drug payment methods for Medicare Part B, and Medicaid changes in the Deficit Reduction Act of 2005.   Thomas Barker represents healthcare providers and payers before the Centers for Medicare & Medicaid Services (CMS) and other components of the Department of Health and Human Services (HHS), Congress, and the Department of Labor. Tom is a former commissioner of the Medicaid and CHIP Payment and Access Commission (MACPAC), an advisory body that provides policy advice to Congress and the states on the Medicaid and CHIP programs. He is one of the authors of the firm's Medicaid & the Law blog, www.medicaidandthelaw.com, which highlights and explains current legal and policy issues in the Medicaid program. Donate to Support the Show: https://www.aiarthritis.org/donate  Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot!

Join us in this episode as co-hosts Tiffany and Deb share a recap of the 2023 ACR, American College of Rheumatology Conference and how these topics specifically affect AiArthritis diseases. Tiffany and Deb also share an insight into our program, “Go With Us!” to Conferences. The Go With Us program allows patients to attend these conferences in real time and get updates on different important or emerging topics for AiArthritis diseases.   In this episode, the co-hosts discuss some main conference topics, both pharma and non-pharma, such as how precision medicine can greatly benefit patients by matching correct treatment plans, how existing treatments are being retested for subgroups and how lifestyle can impact your treatment. Learn common questions doctors receive from patients about their day to day life such as exercise, stress and diet and their advice on how lifestyle modifications can also help to alleviate symptoms. Don't miss this patient recap of the 2023 ACR conference!    Resources & Links:   To join the Go With Us program, click here: https://www.aiarthritis.org/conferences To learn how to volunteer with AiArthritis, check out our program here: https://www.aiarthritis.org/volunteer Come be apart of the AiArthritis Research Database here: https://www.aiarthritis.org/database To learn more about JIA project, click here: www.aiarthritis.org/JIAcommunication Nutrition Resource for Patients : www.tiny.ucsf.edu/rheumnutrition Episode Highlights:  How lifestyle modifications such as exercise, stress and diet can help alleviate symptoms Understanding what parts of your immune system is being triggered by your disease for matching to the best treatments  Discussion on how early should early intervention be done for JIA  The importance of understanding precision medicine to improve matching the correct treatment plan for your AiArthritis disease. AiArthritis Go With Us program where you are able to attend the conferences such as ACR and EULAR in real time to understand current and emerging topics that relate to AiArthritis diseases.  New therapy option in the very beginning stages being discussed at ACR that has the potential to suppress and protect from autoimmune arthritis diseases.  Why supporting research is so important for the development of AiArthritis treatments Meet Our Host:   Tiffany is the CEO at AiArthritis (International Foundation for Autoimmune & Autoinflammatory Arthritis) and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.   Connect with Tiffany: Facebook: @tiffanyAiArthritis Twitter: @TiffWRobertson LinkedIn: @TiffanyWestrichRobertson   Deb Constien is a medically retired Registered Dietitian and a Representative for the AiArthritis with Rheumatoid Arthritis. Deb is also on the Advisory Council for WREN- Wisconsin Research Education Network and a Patient Family Advisor- PFA on an International PCORI research study for ACP- Advanced Care Planning. Connect with Deb: Facebook: @deb.majcherconstien  Instagram: @debconstien Twitter:  @debconstien   Donate to Support the Show: https://www.aiarthritis.org/donate  Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot!

This is an AiArthritis Voices 360 REWIND, where we are bringing back two short episodes that were recorded way back in 2019, because chances the topics are very important! Also note - you will hear the acronym IFAA, which we used prior to using AiArthritis.   The first segment revisits an episode where Tiffany is joined by Dr. Apostolos Kontzias to explore the distinction between autoimmune and autoinflammatory diseases. In the second segment Tiffany discusses the importance of differentiating between arthritis types to improve the misunderstandings that are associated with arthritis and, in turn, will help expedite detection. Join us in this episode discussing AiArthritis's mission to improve awareness and understanding of these conditions.    Episode Highlights:  Innate vs adaptive immunity  The difference between autoimmune and autoinflammatory diseases as well as the subcategories such as age and onset If patients do not have positive labs or biomarkers, it does not mean they do not have an autoimmune disease Listening to your patients is important because every patient is different. Importance of doctors and nurses understanding of the different types of arthritis diseases to increase early detection.   Meet Our Host:   Tiffany is the CEO at AiArthritis (International Foundation for Autoimmune & Autoinflammatory Arthritis) and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.   Connect with Tiffany: Facebook: @tiffanyAiArthritis Twitter: @TiffWRobertson LinkedIn: @TiffanyWestrichRobertson   Meet Our Guest:   Dr. Apostolos Kontzias is the Vice Director, Center of Autoinflammatory Diseases at Stony Brook University, Renaissance School of Medicine. Dr. Kontzias is one of the national and international experts in the field of autoinflammatory diseases/periodic fever syndromes. His subspecialty interest includes seronegative spondyloarthritis and Sjögren's syndrome.   Donate to Support the Show: https://www.aiarthritis.org/donate  Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot! 

At AiArthritis, we represent those diagnosed, their care partners/support network, and the undiagnosed (often called the “Mystery Patients”). This episode is for those struggling to get diagnosed. Join co-hosts Tiffany, Kerry and Danielle as they share their personal diagnosis struggles and delve deep into the challenges many other patients face on their diagnosis journey. From navigating initial symptoms to facing dismissive healthcare providers due to 'normal' blood work, we're talking about common hurdles that delay diagnosis, then encouraging YOU to share your experiences and perspectives as well. Together, we will create a Patient-Led Guide to an AiArthritis Disease Diagnosis.     There are life-altering consequences of not getting diagnosed early, including decreasing chances to achieve remission and increasing the likelihood of comorbidities (such as multiple AiArthritis and related diseases, heart disease, and even Alzheimer's and dementia). The guide we create will help the undiagnosed recognize signs their diagnosis journey may be getting derailed and understand crucial questions to ask health professionals during pivotal visits.    Share your story to help create a patient-led guide: https://bit.ly/undiagnosedadvice   Episode Highlights:  Explore the common struggles patients face while seeking a diagnosis, including being dismissed by doctors and misinterpreting 'normal' blood work. Hear unique stories from Danielle, Kerry, and Tiffany, revealing the emotional and physical toll of diagnosis delays. Discover how delayed diagnoses can lead to irreversible damage and additional health complications. Learn the value of patient advocacy and the importance of asking the right questions during doctor visits. Help us complete our initial Patient-Led Guide to an AiArthritis Disease Diagnosis! https://bit.ly/undiagnosedadvice Meet Our Co-Hosts: Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues. Connect with Tiffany: Facebook: @tiffanyAiArthritis Twitter: @TiffWRobertson LinkedIn: @TiffanyWestrichRobertson   Kerry is a writer and patient advocate living with fibromyalgia, rheumatoid arthritis, sarcoidosis, Sjögren's syndrome, and small fiber neuropathy/dysautonomia (to name a few). As these conditions took their toll and she became less physically able, Kerry became empowered to use her voice to advocate for herself and for patients like her. She is currently working on "Kaleidoscope," a collection of rare disease stories.  Connect with Kerry:     Instagram: @buttahflyk      Twitter: @buttahflyk      Facebook: @floatlikeabuttahfly      Website: http://bit.ly/floatlikeabuttahfly   Danielle is a career educator, wife, and mother of 3. She was diagnosed with Rheumatoid Arthritis and Primary Biliary Cholangitis after years of unproductive medical investigation. She is dedicated to educating fellow AiArthritis patients about the importance of liver health and metabolic testing. In her spare time, she also co-hosts a podcast with her husband and 10 year old daughter about the importance of film history for the next generation. Connect with Danielle:     Website: https://www.omnibusride.com/     Email: 1in20000special@gmail.com   Donate to Support the Show: https://www.aiarthritis.org/donate  Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot! 

Tune in to the latest episode of AiArthritis Voices 360 Talk Show, where your co-hosts Leila, Deb, and Kerry candidly share their personal journeys of undergoing surgery while living with AiArthritis diseases. In this episode, the co-hosts delve into their surgical experiences, including the pivotal surgeries they've had due to their conditions. From Deb's journey triggered by a bunion removal to Kerry's hip replacement due to the complex interplay of autoimmune conditions or Leila's gastric sleeve surgery due to weight gain from treatments, the trio reflects on the unexpected intersections of surgeries and AiArthritis diseases.    They discuss the preparations they navigated before surgery, the challenges they faced with doctor clearances and insurance, and provide valuable insights for fellow AiArthritis patients, including the crucial questions to ask healthcare professionals. Listen in to gain a unique perspective on surgeries with AiArthritis diseases and discover firsthand the resilience and strength that arise from these experiences.   Share your questions here: info@aiarthritis.org Episode Highlights:  What surgeries each co-host has had and whether they are related to their AiArthritis disease What preparation is required before surgeries with an AiArthritis disease What questions patients should ask their doctors to prepare for surgery Co-hosts share their recovery journey Meet Our Co-Hosts:   Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren's Syndrome. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @LupusLifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.   Connect with Leila:     Instagram: @lupuslifestyle.lei      LinkedIn: www.linkedin.com/in/leila-lagandaon       Facebook: @leilaaiarthritis      TikTok: @lupuslifestyle.lei   Deb Constien is a medically retired Registered Dietitian and a Representative for the AiArthritis with Rheumatoid Arthritis. Deb is also on the Advisory Council for WREN- Wisconsin Research Education Network and a Patient Family Advisor- PFA on an International PCORI research study for ACP- Advanced Care Planning.   Connect with Deb:   Facebook: @deb.majcherconstien Instagram: @debconstien Twitter:  @debconstien   Kerry was eventually diagnosed with Fibromyalgia, Sarcoidosis, Small Fiber Neuropathy, Rheumatoid Arthritis, and Sjögren's Syndrome (to name a few). Kerry is a volunteer at New York State Advocacy Chair, Ambassador with Arthritis Foundation, and Patient Ambassador/Peer Mentor with Foundation for Sarcoidosis Research. Kerry does all she can to support the arthritis, sarcoidosis, chronic illness, and rare disease communities   Connect with Kerry:     Instagram: @buttahflyk      Twitter: @buttahflyk      Facebook: @floatlikeabuttahfly   Donate to Support the Show: https://www.aiarthritis.org/donate  Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot!   

This episode is a Step 5 - revisit to the table - as outlined in our 6 Step Patient-Led Problem Solving Process. What do patients need to know about the upcoming changes to biosimilars and interchangeability in 2023?    In this episode, Tiffany is joined by esteemed guest experts Michael Reilly, Dr. Ralph McKibbin and Andrew Spiegel to explore the crucial distinctions between interchangeability, automatic substitution, and non-medical switching. Gain valuable insights into how these differences impact patients not only in the USA but also on a global scale.   In addition, our guests discuss the latest proposed bills in the US regarding biosimilar interchangeability, offering expert perspectives on the legislative developments and their implications for patients and healthcare providers alike.   Join us on this episode as we explore the latest updates in biosimilar interchangeability and share ways to raise your voice against non-medical switching without physician involvement.     Episode Highlights :  What is the difference between Interchangeability, Automatic Substitution, and Non-Medical Switching? Latest proposed legislation regarding biosimilars interchangeability The importance of physician involvement in biosimilars interchangeability What is the chance of original biologic failure if you fail the biosimilar? (and other patient submitted questions) Updates on biosimilars advancements in the US and around the world  What are Automatic Substitution Laws? How to become involved in the fight against the new legislation proposed to remove “interchangeability” protections in switching    Resources Mentioned In This Episode: AiArthritis Biosimilars Hotline: https://www.aiarthritis.org/biosimilars  EMA - What Is A Biosimilar : https://www.ema.europa.eu/en/human-regulatory/overview/biosimilar-medicines-overview Meet Our Co-Hosts & Guests:  Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.   Connect with Tiffany: Facebook: @tiffanyAiArthritis Twitter: @TiffWRobertson LinkedIn: @TiffanyWestrichRobertson   Ralph McKibbin, MD, FACP, FACG, AGAF  is the Chairman of Alliance for Safe Biologic Medicines. Dr. McKibbin is a practicing gastroenterologist at Blair Gastroenterology Associates in Altoona, PA. He is past president of both the Pennsylvania Society of Gastroenterology and of the Digestive Disease National Coalition (DDNC). He sits on the Member Advisory Panel of the Pennsylvania Medical Society; and is a member of the Pennsylvania State Cancer Control Consortium. Dr. McKibbin has written extensively on the issues of non-medical switching and insurance industry utilization management techniques including step therapy and copay accumulator adjustments.   Andrew Spiegel has nearly two decades of experience in the patient advocacy arena. Spiegel co-founded the Colorectal Cancer Alliance and was longtime board member of the Alliance became CEO in January of 2008 and ran the CCA for nearly 5 years, before undertaking his next venture, the Global Colon Cancer Association (GCCA).In addition to his work in the colon cancer community, Spiegel is an active advocate for health care policies both in the US and now worldwide. He is a co-founder and currently serves on the steering committee of the Alliance for Safe Biologic Medicines (ASBM). He is on the Board of Directors, and in December 2014 was elected to Chair, of the Digestive Disease National Coalition (DDNC),a founding member of the Coalition to Increase Clinical Trial Participation and in May of 2016 he began a three year term as a member of the Board of Directors of the International Alliance of Patient Organizations (IAPO) where he chaired the fundraising committee. Spiegel has won multiple awards for his work in patient advocacy.   Michael Reilly, Executive Director of Alliance for Safe Biologic Medicines, has served as the executive director of ASBM since its inception in 2010. He has more than a decade of experience in the federal government developing and implementing healthcare policy. Mr. Reilly served as the associate deputy secretary at the U.S. Department of Health and Human Services (HHS) from 2005-2008 responsible for policy development and implementation, as well as regulatory oversight for issues involving CMS and the FDA. In addition to serving as the associate deputy secretary, Mr. Reilly served as a senior advisor to the assistant secretary for public affairs and the assistant secretary for planning and evaluation at HHS from 2002-2005. Mr. Reilly has been quoted in a series of FDA publications and co-authored many articles on biosimilars for the Generics and Biosimilars Initiative Journal. He has also presented to health regulators worldwide, including the Australian TGA, Health Canada and the World Health Organization (WHO).   Donate to Support the Show: https://www.aiarthritis.org/donate  Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot!

Are you tired of feeling frustrated and unheard when it comes to your doctors, your disease, and all the challenges that come with it? Wish you had a platform to let it all out and find understanding?   Welcome to AiArthritis Rant Discussions - Inspired by Am I The @$$hole? Brace yourself for a new series that will give you a voice and an outlet to vent your frustrations. In this episode, our co-hosts Leila, Charis, and Patrice dive into the rants submitted by our AiArthritis community and they'll react, comment, and delve into topics that resonate with so many.   From stories of triumph over disease denial to the maddening experience of feeling invisible while in pain, this episode covers it all. Get ready to join us as our co-hosts fearlessly read aloud submissions from the AiArthritis community, sharing rants, vents, and personal stories. Together, they'll explore the burning question: Are you the @$$hole?   If you would like to share your own rant with us for the next episode in this series, submit it here! www.AiArthritis.org/Rant Episode Highlights:  Co-hosts react to rant submissions from our AiArthritis community  Overcoming disease denial How to handle being mistaken for looking “healthy” How to explain your pain and symptoms when you have “standard level” test results  Dealing with adverse reactions to medication from your doctor Join our next series by submitting your own AiArthritis rant!  Our Co-Hosts:   Leila is the Health Education and Engagement Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren's Syndrome. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @LupusLifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.     Connect with Leila:     Instagram: @lupuslifestyle.lei      LinkedIn: www.linkedin.com/in/leila-lagandaon       Facebook: @leilaaiarthritis      TikTok: @lupuslifestyle.lei   Charis Hill, who uses they/them pronouns, is a disability activist, writer, speaker and model living with many conditions including Axial Spondyloarthritis (axSpA), Ehlers Danlos Syndrome (EDS), Major Depressive Disorder, Anxiety and Post-Traumatic Stress Disorder. Charis' multi-tiered work uses narrative engagement to advance social justice for multiply-marginalized disabled people. Charis' story is regularly featured internationally in media outlets and in the documentary: "Becoming Incurable." In addition to Charis' leadership on patient advocacy organization committees and regular speaking engagements about health and disability, they boast bylines in HealthCentral, Healthline, and Business Insider; including cover stories for Arthritis Today and Spondylitis Plus magazine; and they have been awarded by the Arthritis Foundation and Spondylitis Association of America for their work on legislative advocacy for state and federal policy efforts.   Connect with Charis: Twitter: @beingcharisblog  Tikok : @beingcharisblog Facebook: @beingcharis Patrice was diagnosed with Polymyalgia Rheumatica. Patrice has been in remission off and on during these last 11 years. Patrice also has had several comorbidities: severe hearing loss which resulted in her now wearing hearing aids, a Baker's Cyst, a vein ablation, plantar fasciitis, pseudo gout, and she also has osteopenia. Patrice has been a volunteer with AiArthritis for over 2 years and has been co-host and a host for the podcast several times. Patrice went to EULAR virtually with AiArthritis in 2020 and 2021 and attended the virtual ACR conference in 2021 with AiArthritis. Connect with Patrice: Facebook : @PatriceJohnson Twitter: @patrice.johnson315 Instagram: @patrice.johnson315   Donate to Support the Show: https://www.aiarthritis.org/donate    Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot!

In this episode, Tiffany will discuss how different organs can be impacted by the disease and the difference between an organ being part of a disease and being a comorbidity. Tiffany will be exploring some examples of organs being affected in various diseases such as eyes, heart, gastrointestinal, and kidneys, as well as a newer autoimmune disease, IgG4, that is commonly being diagnosed for patients alongside their AiArthritis disease. It is crucial for patients to be proactive in their healthcare by asking their healthcare provider about organ involvement - as part of their disease or as a potential comorbidity- and what steps they can take to next manage their health. This episode is just the start of this conversation! Tiffany will be joined by Eileen and Deb at EULAR 2023 in Milan, Italy, as part of our “Go With Us!” To Conferences program. While there we will be recording updates for you from all sessions that cover this topic, which will be available soon after on our YouTube channel/Go With Us! to EULAR 2023 playlist.  Want to get insider information from our visit to EULAR 2023 and first notification of new materials we create from attending? Sign up at https://www.aiarthritis.org/conferences Share your AiArthritis disease comorbidities questions with us here! info@aiarthritis.org Subject: Comorbidities   Episode Highlights:  Understanding the complexities of comorbidities with AiArthritis diseases  Sharing the different comorbidities that commonly occur with AiArthritis diseases  Learn which organs are commonly affected by comorbidities and what your risks are  Understand IgG4, a newer autoimmune disease more and how it may be diagnosed alongside AiArthritis diseases  How to attend conferences with AiArthritis and learn more about comorbidities  Learn more about your AiArthritis disease by joining us at conferences, sharing your questions, joining AiArthritis Voices service or participating in the AiArthritis Research Database Our Co-Hosts: Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues. Connect with Tiffany: Facebook: @TiffanyAiArthritis Twitter: @TiffWRobertson LinkedIn: @TiffanyWestrichRobertson   Donate to Support the Show: https://www.aiarthritis.org/donate    Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot! 

Have you found yourself struggling to explain your AiArthritis disease to others?    In this episode, our co-hosts Leila, Charis, and Patrice put a new topic on the table: how to explain your AiArthritis disease in a 30-60 second elevator pitch. From your workplace to your personal life, our co-hosts will provide practical tips on how to tailor your elevator pitch to different audiences such as co-workers, family, friends or strangers to help you confidently communicate your AiArthritis and advocate for yourself. Join us in this episode to listen to varying elevator pitches as well as have the opportunity to share your own and continue to help us build patient resources!    Share your AiArthritis disease elevator pitch here! info@aiarthritis.org Subject: Elevator Pitch Episode Highlights:  What is an AiArthritis disease elevator pitch? Leila, Charis, and Patrice share their own elevator pitches for their varying AiArthritis diseases  Learn how to tailor your own 30-60 second elevator pitch to help explain your disease to others and advocate for your needs.  Why an elevator pitch is important for anyone living with an AiArthritis disease  Importance of creating varying elevator pitches for different audiences such as your work, family, friends, or even strangers Understand how to handle workplace conversations regarding your AiArthritis disease and what accommodations you need  How you can use humor to help describe your diseases  Our Co-Hosts:   Leila is the Health Education and Engagement Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren's Syndrome. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @LupusLifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok. Connect with Leila:     Instagram: @lupuslifestyle.lei      LinkedIn: www.linkedin.com/in/leila-lagandaon       Facebook: @leilaaiarthritis      YouTube: LupusLifestyle.Lei      TikTok: @lupuslifestyle.lei   Charis Hill, who uses they/them pronouns, is a disability activist, writer, speaker and model living with many conditions including Axial Spondyloarthritis (axSpA), Ehlers Danlos Syndrome (EDS), Major Depressive Disorder, Anxiety and Post-Traumatic Stress Disorder. Charis' multi-tiered work uses narrative engagement to advance social justice for multiply-marginalized disabled people. Charis' story is regularly featured internationally in media outlets and in the documentary: "Becoming Incurable." In addition to Charis' leadership on patient advocacy organization committees and regular speaking engagements about health and disability, they boast bylines in HealthCentral, Healthline, and Business Insider; including cover stories for Arthritis Today and Spondylitis Plus magazine; and they have been awarded by the Arthritis Foundation and Spondylitis Association of America for their work on legislative advocacy for state and federal policy efforts.   Connect with Charis: Twitter: @beingcharisblog  Tikok : @beingcharisblog Facebook: @beingcharisblog Patrice was diagnosed with Polymyalgia Rheumatica. Patrice has been in remission off and on during these last 11 years. Patrice also has had several comorbidities: severe hearing loss which resulted in her now wearing hearing aids, a Baker's Cyst, a vein ablation, plantar fasciitis, pseudo gout, and she also has osteopenia. Patrice has been a volunteer with AiArthritis for over 2 years and has been co-host and a host for the podcast several times. Patrice went to EULAR virtually with AiArthritis in 2020 and 2021 and attended the virtual ACR conference in 2021 with AiArthritis. Connect with Patrice: Facebook : @PatriceJohnson   Donate to Support the Show: https://www.aiarthritis.org/donate    Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot! 

Have you ever experienced the frustration of not being able to get a diagnosis, or worse, receiving the wrong one?   In this episode, our co-hosts Tiffany, Kelly, and Kerry, dive into what it is to be a mystery patient. In addition, they each share their personal experiences of being a mystery patient, and the challenges they experienced with delayed diagnosis.   They discuss the emotional toll that comes with being a mystery patient, including the frustration, anxiety, and uncertainty that can linger for months or even years. We also explore the physical consequences of delayed diagnosis and the correct treatment.In addition, our co-hosts explore the importance of sharing our mystery patient stories to learn from one another, help ease the burden of being a mystery patient and provide support to others along the journey.   Whether you're a mystery patient or have had similar experiences, this episode sheds light on the lessons learned, triumphs, and struggles that many face and why your story matters. Share your story with us today at aiarthritis.org/mysterypatient and help us all learn more about AiArthritis diseases. Episode Highlights:  What is a mystery patient? Kerry, Kelly and Tiffany share their own personal stories of their mystery patient journey and the impacts of a delayed diagnosis. The importance of sharing your diagnosis journey story so we can learn from each other and understand how to help others along in this process. The mental and physical toll that occurs with a delayed diagnosis  Is it ethical to treat Undifferentiated Diseases if it can be treated other ways? How sharing your story can help uncover the best questions to ask during your doctor visits Our Co-Hosts:   Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.   Connect with Tiffany: Facebook: @TiffanyAiArthritis Twitter: @TiffWRobertson LinkedIn: @TiffanyWestrichRobertson   Kerry was eventually diagnosed with Fibromyalgia, Sarcoidosis, Small Fiber Neuropathy, Rheumatoid Arthritis, and Sjögren's Syndrome (to name a few). Kerry is a volunteer at New York State Advocacy Chair, Ambassador with Arthritis Foundation, and Patient Ambassador/Peer Mentor with Foundation for Sarcoidosis Research. Kerry does all she can to support the arthritis, sarcoidosis, chronic illness, and rare disease communities   Connect with Kerry:     Instagram: @buttahflyk      Twitter: @buttahflyk      Facebook: @floatlikeabuttahfly   Kelly Conway is a speech-language pathologist, author/blogger, and a patient advocate.  She has been living with autoimmune arthritis since age 14 but wasn't formally diagnosed until age 32.  That diagnosis has changed more than 5 times over the past 18 years.  Through social media, she connected with fellow patients and cofounded the International Foundation for Autoimmune and Autoinflammatory arthritis. Kelly believes in the power of the patient voice and sharing our stories to raise awareness, education, and advocacy. Connect with Kelly: Facebook: @Lolabellaquin Twitter: @Lolabellaquin     Donate to Support the Show: https://www.aiarthritis.org/donate    Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot! 

Have you or your family been affected by juvenile arthritis? On this episode, Tiffany is joined by Rochelle Lentini, CEO and President of Purple Playas Foundation, who have united with other specialists and families to identify additional tips to improve communication. During this episode, Rochelle and Tiffany discuss this new collaboration project between AiArthritis and Purple Playas Foundation, along with Rheumatology Nurses Society and Novartis, to create discussion aids and question guidance to help families improve communication with all the professionals they meet along the way.  Tiffany and Rochelle also provide suggestions that can offer some hope to families struggling to get answers. If you would like to share your story, insights, or recommendations to help us create these new tools to help those navigating through their Juvenile Arthritis journey, please fill sign up using our Google form at www.aiarthritis.org/jiacommunication Episode Highlights:  Rochelle shares the difficult, frustrating, and lengthy diagnosis process for her son's Juvenile Arthritis  Common symptoms to look out for with Juvenile Arthritis  What types of doctors you might see along the diagnosis process Importance of symptom tracking with your children to provide as much details and data to your physician as possible Tips on best questions to ask your doctor when seeking a diagnosis How to improve patient-doctor communication for better understanding on both sides How to communicate with your child and give them a voice when interacting with their doctor Purple Playas and AiArthritis are coming together to collaborate on new resource tools for parents and children seeking a Juvenile Arthritis diagnosis How to get involved in the new resource tool and share your insights and recommendations for improvements  Thank you to Novartis for supporting the Journey Improvement Aids (JIAs) for Juvenile Idiopathic Arthritis (JIA) - Detection, Diagnosis, Treatment project.    Our Co-Hosts: Tiffany is the CEO of the International Foundation for AiArthritis, and uses her professional expertise in mind-mapping and problem-solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues. Connect with Tiffany: Facebook: @TiffanyAiArthritis Twitter: @TiffWRobertson LinkedIn: @TiffanyWestrichRobertson Rochelle Lentini, M.Ed. is the CEO/President of the Purple Playas Foundation and an early childhood education national consultant/trainer. She has RA and her son has juvenile arthritis, hypogammaglobulinemia, and other overlapping conditions. Rochelle has over 40 years of experience working with children with disabilities and their families and is a nationally recognized speaker. Her passions include family-centered support, inclusion, and inspiring hope for kids with chronic illnesses.  Connect with Rochelle:     Facebook : @PurplePlayas     Donate to Support the Show: https://www.aiarthritis.org/donate  Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot!

Join us for this episode where the co-hosts, Tiffany and Leila, share their personal journeys of being diagnosed with AiArthritis diseases. Tune in to hear how their journey of being diagnosed and misdiagnosed and the lessons they learned throughout the process.    We also delve into the exciting new resource tool developed by AiArthritis, which helps patients navigate the process of seeking a diagnosis, understanding symptoms, and asking the right questions of their doctors. Plus, we invite other patients to share their stories and provide insights for those just starting their Auto + inflammatory arthritis journey. Join us for an informative and uplifting conversation on Auto + inflammatory arthritis diseases.    If you would like to share your story, insights or recommendations to help improve our new tool, please fill out the Google form on www.aiarthritis.org/diseases Episode Highlights:  Leila and Tiffany share their different stories of being diagnosed with their diseases  Importance of resources for auto + arthritis diseases for patients to compare their symptoms to and hear other patients stories How to best be supported on the journey of discovering what your disease may be when you show first signs of symptoms  What questions are recommended to ask your doctor when searching for a diagnosis List of different symptoms you may experience with auto or arthritis diseases Best advice for patients seeking AiArthritis diagnosis  Links Mentioned:    Come share your stories for the new AiArthritis Ebook : The Good, The Bad & The Ugly : AiArthritis.org/gbu   Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.   Connect with Tiffany: Facebook: @TiffanyAiArthritis Twitter: @TiffWRobertson LinkedIn: @TiffanyWestrichRobertson   Leila is the Health Education and Engagement Manager at AiArthritis. She manages the AiArthritis Voices Program. At 8 years old, she was diagnosed with immune thrombocytopenia (low platelet count). She spent a lot of time in the hospital trying different infusions and therapies; including prednisone - yuck! Rituximab ended up being the biologic that saved her life. From that experience, she knew that she wanted to be able to help people just like all the healthcare workers at UCSF helped her through that difficult time   Connect with Leila:     Instagram: @lupuslifestyle.lei      LinkedIn: www.linkedin.com/in/leila-lagandaon       Facebook: @leilaaiarthritis      YouTube: LupusLifestyle.Lei      TikTok: @lupuslifestyle.lei     Donate to Support the Show: https://www.aiarthritis.org/donate    Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot! 

Welcome to part 2 of the Rheumy Rounds episode where we bring Rheumatologists and patients to the table. During this episode, we are going to be discussing the good, the bad and the ugly in office visits. In an effort to improve office visits and patient experiences, we are creating an Ebook with a collection of all your stories.    During this episode, Deb Constein and Tiffany Westrich-Robertson share their experiences as patients and Dr. Al Kim shares his perspective as a physician. In addition, we highlight the importance of active listening and communication during office visits. Join us on this episode to hear more insights, research and information on best practices to improve your experiences as a doctor or patients.    If you are interested in sharing your patient experience for our new Ebook, send your stories over to aiarthritis.org/gbu  Episode Highlights:  AiArthritis is creating an Ebook with a collection of patient stories of the good, the bad and the ugly to study these interactions and help improve patient care. Deb, Tiffany and Dr. Al Kim share their experiences with undiagnosed and misdiagnosis and patient care  Importance of active listening as a physician so you can work together to find a proper diagnosis or treatment   How best to set expectations as a physician for treatment options  Importance of doctors managing their emotional reserve when seeing patients in the office daily  Best practices at building better doctor-patient communication in the office    Links Mentioned:    Come share your stories for the new AiArthritis Ebook : The Good, The Bad & The Ugly : AiArthritis.org/gbu   Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.   Connect with Tiffany: Facebook: @TiffanyAiArthritis Twitter: @TiffWRobertson LinkedIn: @TiffanyWestrichRobertson   Deb Constien is a medically retired Registered Dietitian and a Representative for the AiArthritis with Rheumatoid Arthritis. Deb is also on the Advisory Council for WREN- Wisconsin Research Education Network and a Patient Family Advisor- PFA on an International PCORI research study for ACP- Advanced Care Planning.   Connect with Deb:   Facebook: @deb.majcherconstien Instagram: @debconstien Twitter:  @debconstien     Dr. Kim is an Assistant Professor of Medicine and of Pathology & Immunology at Washington University School of Medicine. He also founded and directs the Washington University Lupus Clinic. Dr. Kim's research group is focused on addressing the unmet needs of human systemic lupus erythematosus (SLE), including understanding and leveraging the biomarker potential of complement activation products, testing novel noninvasive imaging platforms such as photo acoustics to detect lupus nephritis, understanding the relationship between sleep quality and lupus activity, and restoring eroded social support in patients with SLE.   Connect with Dr. Al Kim Instagram: @washulupusclinic Twitter : @AlHKim     Donate to Support the Show: https://www.aiarthritis.org/donate  Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot! 

Welcome to another Rheumy Rounds episode where we bring Rheumatologists and patients to the table. During this episode, we are going to be discussing the good, the bad and the ugly in office visits. In an effort to improve office visits and patient experiences, we will be collecting YOUR stories and examples of Good, Bad, and just downright Ugly office visits. We will turn this collection into an eBook and AiArthritis (patients) and rheumatologists will read your submissions and work together to create recommendations to improve office communications (citing YOUR examples!)  During this episode, Kerry Wong and Tiffany Westrich-Robertson share their experiences as patients and Dr. Lisa Zickuhr shares her perspective as a physician. Together on this episode, we highlight the importance of communication, compassion and openness in bettering patient-doctor relationships.  IF YOU ARE A PATIENT/FAMILY OR RHEUMATOLOGIST, PLEASE SUBMIT YOUR STORIES FOR THIS PROJECT AT https://www.aiarthritis.org/gbu   Episode Highlights:  AiArthritis is creating an Ebook with a collection of patient stories of the good, the bad and the ugly to study these interactions and help improve patient care. Kerry, Tiffany and Dr. Lisa Zickuhr share their experiences with undiagnosed and misdiagnosis and patient care  How a doctor can approach a patient who they are unable to diagnosis in the beginning stages  Patients need to be receptive to a physician's message as much as a physician needs to be empathetic to the patient The importance of knowing what to do next or monitor for if you're tests come back negative so the patient doesn't feel left without any direction Information sharing between the doctor and patient can be the difference between a bad and good interaction even without diagnosis   Links Mentioned:  Come share your stories for the new AiArthritis Ebook : The Good, The Bad & The Ugly : AiArthritis.org/gbu Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.   Connect with Tiffany: Facebook: @TiffanyAiArthritis Twitter: @TiffWRobertson LinkedIn: @TiffanyWestrichRobertson   Kerry was eventually diagnosed with Fibromyalgia, Sarcoidosis, Small Fiber Neuropathy, Rheumatoid Arthritis, and Sjögren's Syndrome (to name a few). Kerry is a volunteer at New York State Advocacy Chair, Ambassador with Arthritis Foundation, and Patient Ambassador/Peer Mentor with Foundation for Sarcoidosis Research. Kerry does all she can to support the arthritis, sarcoidosis, chronic illness, and rare disease communities   Connect with Kerry:     Instagram: @buttahflyk      Twitter: @buttahflyk      Facebook: @floatlikeabuttahfly   Dr. Lisa Zickuhr  Dr. Zickuhr is a rheumatologist and clinician educator who devotes half of her time to caring for patients with autoimmune rheumatic diseases and half to educating physicians in training. Her clinical interests lie in treating patients with systemic lupus erythematosus and other related conditions. She also cares for patients using telemedicine and is interested in the best ways to teach health care professionals how to communicate with and examine patients virtually.   Connect with Dr. Lisa Zickuhr:       Instagram: @washumedicine       Twitter : @WUSTLmed   Donate to Support the Show: https://www.aiarthritis.org/donate  Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot!

Patient involvement in research is key to developing knowledge and understanding around the many AiArthritis diseases. As a person living with AiArthritis diseases, there are lots of ways you can get involved with patient research such as clinical trials, surveys, focus groups, data banks and more. You can even elevate your participation through conference attendance and being part of the research team! In this month's episode, we join our co-hosts Tiffany, Deb, Kerry and Eileen, all living with AiArthritis diseases, as they discuss the importance of patient involvement in research. During this episode, the co-hosts will share their own experiences in patient research, how inclusion criteria impacts the ability to participate, what factors to consider before joining and how to find patient research opportunities. Join us in this episode as we discuss clinical trials and start the important conversation of patient research.     Episode Highlights:  Patient's Experiences in Clinical Trials Inclusion & Exclusion Criteria For Clinical Trials Why it is important for patients to be involved in research  How do you find patient research opportunities  What to consider before joining patient research  Types of patient research to participate in   Links Mentioned:  www.aiarthritis.org/clinicaltrials www.clinicaltrials.gov  Meet Our Co-Hosts: Tiffany Westrich-Robertson is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues. Connect with Tiffany: Facebook: @TiffanyAiArthritis Twitter: @TiffWRobertson LinkedIn: @TiffanyWestrichRobertson   Deb Constien is a medically retired Registered Dietitian and a Representative for the AiArthritis with Rheumatoid Arthritis. Deb is also on the Advisory Council for WREN- Wisconsin Research Education Network and a Patient Family Advisor- PFA on an International PCORI research study for ACP- Advanced Care Planning. Connect with Deb: Facebook: @deb.majcherconstien  Instagram: @debconstien Twitter:  @debconstien   Eileen Davidson is a rheumatoid arthritis patient advocate from Vancouver Canada. She volunteers with the Arthritis Research Canada patient advisory board and the Canadian Institute of Health Research - Institute of Musculoskeletal Health and Arthritis patient engagement research ambassador, among others. When not advocating she is writing about her experience with arthritis through Creaky Joints, Healthline or Chronic Eileen. Connect with Eileen: Twitter:  @Chroniceileen   Kerry Wong was eventually diagnosed with Fibromyalgia, Sarcoidosis, Small Fiber Neuropathy, Rheumatoid Arthritis, and Sjögren's Syndrome (to name a few). Kerry is a volunteer at New York State Advocacy Chair, Ambassador with Arthritis Foundation, and Patient Ambassador/Peer Mentor with Foundation for Sarcoidosis Research. Kerry does all she can to support the arthritis, sarcoidosis, chronic illness, and rare disease communities Connect with Kerry:     Instagram: @buttahflyk      Twitter: @buttahflyk      Facebook: @floatlikeabuttahfly     Donate to Support the Show: https://www.aiarthritis.org/donate  Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE   AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot! 

This episode is a Step 2 - an initial visit to the table - as outlined in our 6 Step Patient-Led Problem Solving Process. DEIA : Diversity, Equity, Inclusion, and Accessibility. Each of these elements that affect patients daily should be considered when thinking about patient diagnosis, physician care, treatment plans, research, lifestyle choices, and societal inclusion.  In this month's episode, we join Tiffany from AiArthritis, Estela Mata from Looms 4 Lupus, and Charis Hill - disability activist, as we are going to be discussing this topic. Each co-host has their own story to share, their experience with DEIA, and how it has impacted their patient journey as well as our community. Join us as we just scratch the surface in this important, but necessary, topic.   Episode Highlights :  What is DEIA? How diversity affects representation in clinical data and can lead to a delayed diagnosis  How equity and the accessibility patients may have to physicians, treatment types, providers, household income and lifestyle choices affects potential treatment and care plans The importance of including diverse groups in clinical data What social determinants should be considered when determining approach to care AiArthritis' patient lead research program  How healthcare biases contribute to patient disparities How to increase digital accessibility for patients    Resources Mentioned In This Episode: ‘About Damn Time': Disabilities Get Represented at Emmys and Beyond https://sarcoidosisnews.com/columns/about-damn-time-disabilities-get-represented-emmy-awards-disability-representation/ Subconscious vs Unconscious: The Complete Comparison Learn about Unconscious vs Subconscious mind: definition, synonym. How to manage minds Subconsciously and Unconsciously: https://diversity.social/unconscious-vs-subconscious/ Physicians and Implicit Bias: How Doctors May Unwittingly Perpetuate Health Care Disparities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3797360/#:~:text=All%20of%20society%20is%20susceptible,ethnicity%2C%20gender%20or%20other%20characteristics Race, Ethnicity, and Disparities in Rheumatology Educational Materials https://onlinelibrary.wiley.com/doi/10.1002/acr.24602?elq_cid=26233150&elq_mid=64639    Meet Our Co-Hosts & Guests:  Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.   Connect with Tiffany: Facebook: @TiffanyAiArthritis Twitter: @TiffWRobertson LinkedIn: @TiffanyWestrichRobertson   Estela Mata is the President and co-founder of Looms for Lupus, a non-profit organization that provides Lupus, Fibromyalgia and Mental Health Awareness, advocacy, and support to those living with these conditions, their loved ones, and caregivers. In 2011 she co-founded Looms for Lupus when her sister almost lost her life to Immune thrombocytopenia and Lupus; she is alive today because she advocated for herself. Estela has supported her sister and her passion to help others has evolved to “iLOOMinating”, Engaging, Empowering and Supporting the community as a whole to take control of their overall healthcare. Connect with Estela : Facebook:@estelamata @looms4lupus Instagram: @estela_mata @looms4lupus Twitter: @estelamata @looms4lupus YouTube: Looms4Lupus TikTok: estela.mata   Charis Hill, who uses they/them pronouns, is a disability activist, writer, speaker and model living with many conditions including Axial Spondyloarthritis (axSpA), Ehlers Danlos Syndrome (EDS), Major Depressive Disorder, Anxiety and Post-Traumatic Stress Disorder. Charis' multi-tiered work uses narrative engagement to advance social justice for multiply-marginalized disabled people. Charis' story is regularly featured internationally in media outlets and in the documentary: "Becoming Incurable." In addition to Charis' leadership on patient advocacy organization committees and regular speaking engagements about health and disability, they boast bylines in HealthCentral, Healthline, and Business Insider; including cover stories for Arthritis Today and Spondylitis Plus magazine; and they have been awarded by the Arthritis Foundation and Spondylitis Association of America for their work on legislative advocacy for state and federal policy efforts. Connect with Charis: Twitter: @beingcharisblog    Donate to Support the Show: https://www.aiarthritis.org/donate  Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot!   

This episode is a Step 2 - an initial visit to the table - as outlined in our 6 Step Patient-Led Problem Solving Process. As more treatment options are moving towards Biosimilars, many questions are being raised by patients. What are Biosimilars? Are they safe and effective? Are there downsides? Upsides? What are doctors' opinions on Biosimilars? What should I do if I am switched to a Biosimilar?   These are all questions that are at the forefront of our minds when living with AiArthritis diseases. This month, we invited patient advocates, doctors and coalition leaders to join the conversation to discuss and answer the many questions someone living with AiArthritis may have. Join us this month as we break down Biosimilars, share opinions, concerns, research, and resources so patients can better understand Biosimilars and what their availability means for their treatment plan.   Episode Highlights :  What are Biosimilars? The main concerns patients have with switching to Biosimilars What is Non-medical switching? Automatic Substitution? Interchangeability? Biosimilars are safe and effective and are recommended for patients to use if it does not interrupt continuity of care Regulations and the physicians involvement with switching patients to biosimilars  First steps to take if you are asked to switch to a Biosimilar Research and resources to learn more about Biosimilars    Resources Mentioned In This Episode: AiArthritis Biosimilars Hotline: https://www.aiarthritis.org/biosimilars  Biosimilars Patient Advocacy Toolkit: World Patients Alliance/Global Colon Cancer Association ASBM/GaBI Webinar: KEY SUCCESS FACTORS FOR BIOSIMILAR UPTAKE IN EU and US - Good overview of US and EU markets:  Key Factors for Successful Uptake of Biosimilars: Europe and The US : https://www.youtube.com/watch?v=R5DlKPpMjDk Non-Medical Switching of Biologicals/Biosimilars : Canada, Europe and The US : https://www.youtube.com/watch?v=A5nJkCJM32M Non-Medical Switching : Physician Perspectives : https://www.youtube.com/watch?v=R9ULgUQEcZ0 GaBI Whitepaper on Canadian Substitution Policies: http://gabi-journal.net/a-critical-review-of-substitution-policy-for-biosimilars-in-canada.html GaBI Whitepaper on US Biosimilar Market Catching Up to Europe: http://gabi-journal.net/a-white-paper-us-biosimilars-market-on-pace-with-europe.html GaBI Whitepaper on Lessons from the European Biosimilar Markets: http://gabi-journal.net/policy-recommendations-for-a-sustainable-biosimilars-market-lessons-from-europe.html Meet Our Co-Hosts & Guests:  Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues.   Connect with Tiffany: Facebook: @tiffanyAiArthritis Twitter: @TiffWRobertson LinkedIn: @TiffanyWestrichRobertson   Ralph McKibbin, MD, FACP, FACG, AGAF  is the Chairman of Alliance for Safe Biologic Medicines. Dr. McKibbin is a practicing gastroenterologist at Blair Gastroenterology Associates in Altoona, PA. He is past president of both the Pennsylvania Society of Gastroenterology and of the Digestive Disease National Coalition (DDNC). He sits on the Member Advisory Panel of the Pennsylvania Medical Society; and is a member of the Pennsylvania State Cancer Control Consortium. Dr. McKibbin has written extensively on the issues of non-medical switching and insurance industry utilization management techniques including step therapy and copay accumulator adjustments.   Andrew Spiegel has nearly two decades of experience in the patient advocacy arena. Spiegel co-founded the Colorectal Cancer Alliance, now the leading US based national patient advocacy organization dedicated to colon cancer. Mr. Spiegel, an attorney, besides being a co-founder of the organization and longtime board member of the Alliance became CEO in January of 2008 and he ran the CCA for nearly 5 years, before undertaking his next venture, the Global Colon Cancer Association (GCCA).In addition to his work in the colon cancer community, Spiegel is an active advocate for health care policies both in the US and now worldwide. He is a co-founder and currently serves on the steering committee of the Alliance for Safe Biologic Medicines (ASBM). He is on the Board of Directors, and in December 2014 was elected to Chair, of the Digestive Disease National Coalition (DDNC),a founding member of the Coalition to Increase Clinical Trial Participation and in May of 2016 he began a three year term as a member of the Board of Directors of the International Alliance of Patient Organizations (IAPO) where he chaired the fundraising committee. Spiegel has won multiple awards for his work in patient advocacy.   Michael Reilly, Executive Director of Alliance for Safe Biologic Medicines, has served as the executive director of ASBM since its inception in 2010. He has more than a decade of experience in the federal government developing and implementing healthcare policy. Mr. Reilly served as the associate deputy secretary at the U.S. Department of Health and Human Services (HHS) from 2005-2008 responsible for policy development and implementation, as well as regulatory oversight for issues involving CMS and the FDA. In addition to serving as the associate deputy secretary, Mr. Reilly served as a senior advisor to the assistant secretary for public affairs and the assistant secretary for planning and evaluation at HHS from 2002-2005. Mr. Reilly has been quoted in a series of FDA publications and co-authored many articles on biosimilars for the Generics and Biosimilars Initiative Journal. He has also presented to health regulators worldwide, including the Australian TGA, Health Canada and the World Health Organization (WHO).   Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you'll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow. JOIN TODAY! AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot!     

This episode is a Step 5 - a revisit to the table - as outlined in our 6 Step Patient-Led Problem Solving Process Over the last couple of years, the world has watched as COVID-19 has evolved into variants that differ slightly from the original virus. We've seen vaccinations and boosters work, yet we also know that new strains are somewhat resistant to high level protection. COVID treatments have emerged to help those who are immunocompromised - like those with AiArthritis diseases who are on immunosuppressive treatments - but can we access them and, if so, how?  We've been on quite an emotional and physical rollercoaster, and it's not over. Should we be concerned about “Long COVID” and “Post COVID”? What is research showing about COVID in our rheumatology population? Join Tiffany, Patrice, and Deb - all persons living with AiArthritis diseases and who also all have experienced COVID recently - as they share the latest research, guidance, and their own personal patient-guided opinions - in regards to the world of COVID in 2022.    Episode Highlights :  What are Long COVID and Post COVID and how either can affect someone with AiArthritis diseases? The key factors that increase risk of getting COVID Evolution of COVID and the relevance of current COVID research The first steps to take if you are someone with AiArthritis diseases and diagnosed with COVID How to access medication to prevent COVID for those who are immunocompromised  The impact self care and your mental health can have on developing post COVID Resources Mentioned In This Episode: Exploring the Link Between COVID-19 and Autoimmunity Can Help Patients With Long-Haul COVID: https://www.rheumatologyadvisor.com/home/news/exploring-the-link-between-covid-19-and-autoimmunity-can-help-patients-with-long-haul-covid/ Long COVID is associated with poor mental health in patients with rheumatic disease: results from a 14-month longitudinal study: https://academic.oup.com/rheumatology/article/61/Supplement_1/keac133.074/6573114  COVID-19 Outcomes Similar in Patients With and Without Immune-Mediated Inflammatory Diseases: https://www.rheumatologyadvisor.com/home/conference-highlights/eular-2022-coverage/covid-19-outcomes-similar-in-patients-with-and-without-immune-mediated-inflammatory-diseases/ Still testing positive after day 10? How to decide when to end your COVID isolation : https://www.npr.org/sections/health-shots/2022/06/30/1108615724/positive-test-isolation The EULAR 2022 Debate: Will COVID-19 have a long-term impact on rheumatology practice? : https://rheumatology.medicinematters.com/eular-2022/covid-19/debate-long-term-impact/23124564 Post-COVID-19 Tachycardia Syndrome: A Distinct Phenotype of Post-Acute COVID-19 Syndrome : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8356730/ Risk Factors for “Long Haul” COVID-19 in Rheumatology Outpatients in New York City : https://acrabstracts.org/abstract/risk-factors-for-long-haul-covid-19-in-rheumatology-outpatients-in-new-york-city/  COVID-19 in people with rheumatic diseases: risks, outcomes, treatment considerations: https://www.nature.com/articles/s41584-022-00755-x  Coronavirus FAQ: Biden had a Paxlovid rebound. Is that common? What's it all about?: https://www.npr.org/sections/goatsandsoda/2022/05/20/1099176613/coronavirus-faq-i-took-paxlovid-i-felt-better-then-symptoms-rebounded-whats-up  Long COVID is associated with poor mental health in patients with rheumatic disease: results from a 14-month longitudinal study : https://academic.oup.com/rheumatology/article/61/Supplement_1/keac133.074/6573114    Shout Outs:  Dr. Al Kim: Website: https://profiles.wustl.edu/en/persons/alfred-kim Twitter: @alhkim   Meet Our Co-Hosts:  Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues. Connect with Tiffany: Facebook: @tiffanyAiArthritis Twitter: @TiffWTobertson LinkedIn: @TiffanyWestrichRobertson Eileen is a rheumatoid arthritis patient advocate from Vancouver Canada. She volunteers with the Arthritis Research Canada patient advisory board and the Canadian Institute of Health Research - Institute of Musculoskeletal Health and Arthritis patient engagement research ambassador, among others.  Connect With Eileen:  Instagram: @chroniceileen Twitter: @chroniceileen Patrice was diagnosed with Polymyalgia Rheumatica. Patrice has been in remission off and on during these last 11 years. Patrice also has had several comorbidities: severe hearing loss which resulted in her now wearing hearing aids, a Baker's Cyst, a vein ablation, plantar fasciitis, pseudo gout, and she also has osteopenia. Patrice has been a volunteer with AiArthritis for over 2 years and has been co-host and a host for the podcast several times. Patrice went to EULAR virtually with AiArthritis in 2020 and 2021 and attended the virtual ACR conference in 2021 with AiArthritis. Connect with Patrice: Facebook : @PatriceJohnson   Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you'll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow. JOIN TODAY! AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot! 

This episode is a Step 2 - put the topic on the table for the 1st time - in our 6 Step Patient-Led Problem Solving Process   In this episode Tiffany, Deb, and Bridget talk about personalized therapy, or complimentary, non-pharmacologic options, that are being researched and added to new recommendations for full disease management. We often talk about the importance of Precision Medicine (which involves finding the best pharmacologic treatment for each person's individual needs), but as we, as patients, identify what works best for our unique needs, we have to consider all options (both pharmaceutical and non-pharmaceutical). Just as with our biologics and other disease modifying treatments - where one works for one person and not the other - we need to think about alternative therapies the same way. For example, just because you “tried diet”, did you try all the diets? We all need to find our own right combination of therapy - but what does that look like to you? Then we also need access to that option, which can be challenging, but together - with AiArthritis - we can fight to make access a reality!   *All main episodes that air on the 1st Sunday of each month are either Step 2 in our 6 step problem solving process (first time the topic is on the table) OR a Step 5, which is a revisit to the table. In a Step 2, we are  putting a topic on the table for the first time to open conversation - and continue break out conversations (360its) to further explore what is most important to patients. Make sure your voice is counted!    Show Notes: Episode 75 – “The Whole Picture: Holistic, Personalized Therapy”   00:36 – Tiffany welcomes listeners. 01:05 - Tiffany is joined today by AiArthritis Voices 360 recurring co-hosts Bridget and Deb. 01:15 - Deb Constien was diagnosed with Rheumatoid Arthritis at the age of 13. 01:50 - Bridget Serrett has multiple autoimmune diseases and genetic conditions. 02:49 - Today's topic is personalized, complementary, non-pharmacologic therapies. 03:50 - In order to manage a systemic, whole-body disease, we need holistic treatment options. 05:36 - Deb is a dietitian, although she is currently medically retired. 07:00 - Deb did not have access to complementary therapies when she was younger because they are expensive and not covered by insurance. 07:41 - Deb does not have any inflammatory triggers, so she did not find relief from any particular diet. 09:09 - Always tell your doctor if you are taking any supplements because they need to know anything you are taking to manage your medications. 09:21 - Bridget has tried every complementary therapy she could find. 09:38 - She also has found that most people do not have access to quality complementary therapies due to prohibitive costs. 10:47 - Tiffany has always been interested in complementary therapies, especially exercise. 13:30 - There is an access barrier for most patients to the recommended complementary therapies because most are not covered by insurance or national healthcare systems. 14:28. - Data drives access, but the voices of patients about their need for access are also. Important to eliminating barriers to these therapies. 15:21 - Tiffany explains clinical practice guidelines. 16:28 - Clinical practice guidelines provide justification for access to insurance companies and national health programs. 17:07 - Deb is on the panel for the American College of Rheumatology to develop clinical practice guidelines for holistic, complementary therapies. 17:15 - Deb and Tiffany explain the ACR panel process for developing clinical guidelines. 23:53 - Many people have a limited amount of covered physical therapy sessions per year, which can lead to difficult choices about how to prioritize health needs. 26:35 - Personalized treatments are unique to the individual, so what works for one patient may not work for another. 29:01 - The elimination diet requires a lot of discipline and consistency to even find out if it works for someone. 30:52 - Access is important, and having the ability to find the combination of therapies that work for a patient is critical to successful treatment. 32:10 - Tiffany discusses the AiArthritis initiative in partnership with FORWARD National Databank for Rheumatic Diseases to collect patient information and conduct research to try and improve early detection / intervention and patient individuality as it relates to precision medicine and personalized therapies. 35:39 - Even Dr. Al Kim who is very invested in holistic guidelines does not spend much time during patient appointments on complementary therapies because the subject is currently very nebulous and inaccessible. 37:18 - There is some concern that unethical actors may take advantage of vulnerable patients when we incorporate providers that are not part of the traditional medical field. 40:17 - Chronic pain is getting its own code in the healthcare coding system. 40:43 - Tiffany explains the ICD-11 coding system and how this will help patients. 42:33 - Deb attended a EULAR session called “Not Another Pill: Integrative Pain Management Approaches” at the 2022 EULAR Conference in June. 43:40 - The Biopsychosocial Model is the gold standard for addressing chronic pain and includes a requirement that providers believe their patients and value them. 47:23 - Being dismissed by doctors causes significant delays in diagnosis and access to treatments, which contributes directly to poorer patient outcomes. 49:23 - Having a code for chronic pain may help eliminate barriers to treatment options that result from doctors being afraid their licenses will be in jeopardy with government regulating authorities for prescribing controlled substances too often. 50:51 - When patients go to a doctor who doesn't believe them it can cause PTSD within the aiarthritis patient community. 52:24 - Sometimes when patients believe they are receiving treatments in blind placebo trials, they report improvement even though they are not really receiving any medication, which is called the placebo effect.  52:41 - Researchers wonder if the placebo effect could help uncover a mind-body connection that could help treat chronic pain. 53:15 - For more information on the mind-body connection research, check out our YouTube channel for a video on this topic. 53:55 - Complementary therapies are necessary because we need options for people who want to use fewer or no pharmacologic treatments. 55:40 - We need to hear from you on this topic! Email us at podcast@aiarthritis.org or find us on social media @IFAiArthritis on all platforms. 56:03 - Visit our website (aiarthritisvoices.org) to join our AiArthritis Voices program. 58:20 - For more information on medical cannabis or to get involved in advocating for legal access to medical cannabis, you can connect with Bridget on Facebook @cprcofcolorado (new website coming soon). 1:00:38 - To continue this conversation, donate to support the show, or for information on any of our initiatives, please visit us @ aiarthritis.org.       Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you'll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow. JOIN TODAY! AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot! 

This is a Step 5 Episode*   In this episode, Tiffany, CEO of AiArthritis, is joined by Catherine Ames, from the Young Patients' Autoimmune Research & Empowerment Alliance, both persons living with AiArthritis diseases and both who attended the 16th Annual Personalized Medicine Conference in May 2022. Precision Medicine (PM) may currently be in the cancer space, but it's quickly moving into the autoimmune/autoinflammatory space and there are some things they want you to know. What is it? Why is it important to understand and what can you do to make sure you can benefit most from it as it enters our space?    They talk about its impact on prevention (yes, we said it), early detection, diagnosis, and even matching treatments based on genetic profiles and biomarkers (blood, tissues, for example). Also, PM may be a solution to capping the high cost of healthcare, which means it's as much of a research issue as a public policy issue.  *All main episodes that air on the 1st Sunday of each month are either Step 2 in our 6 step problem solving process (first time the topic is on the table) OR a Step 5, which is a revisit to the table. In a Step 5, we are ready to take action to solve a problem (create a resource, ask to join a project, etc.) Show Notes: Episode 74 – “EveryONE's Voice Precisely Matters”   00:52 – Tiffany welcomes listeners. 01:12 - Tiffany is a patient living with non-radiographic axial spondyloarthritis. 01:32 - Tiffany is joined by Catherine Ames, a college student living with Lupus. 04:10 - Catherine is here today to represent the Young Patients' Autoimmune Research & Empowerment Alliance which works to include patients age 16-23 in medical research. 08:00 - Catherine and Tiffany met at a conference on Personalized (Precision) Medicine. 08:28 - AiArthritis distinguishes between Personalized Medicine and Precision Medicine because Personalized Medicine is more about patient preference and Precision Medicine is based on biomarkers. 10:01 - The conference they attended was largely dedicated to treatment of cancer more so than treatment of autoimmune disease because cancer treatment really spawned the field of Precision Medicine based on genetic sequencing of excised tumors. 13:07 - AiArthritis and AREA are at the forefront of Precision Medicine research in the autoimmune arena because most experts don't anticipate serious breakthroughs in the immunology sphere with regard to Precision Medicine until 2025 or later. 15:05 - The keynote speaker of the conference talked about the importance of teaching the FDA and other regulatory agencies about innovative research. 17:08 - Early intervention with Precision Medicine could reduce the risk of comorbidities and increase the odds of achieving remission. 18:30 - Precision Medicine is intended to be expanded beyond cancer to other spheres within medical care, but there are access issues within the current healthcare system, especially in the United States. 19:23 - Precision Medicine has the potential to decrease healthcare costs in any system by intervening early to avoid patients developing complicated and expensive conditions. 23:20 - One example of Precision Medicine applications in AiArthritis is the use of biomarkers within RA to predict more aggressive forms of the disease. 24:10 - The reality is that AiArthritis diseases require expensive treatments that impose a significant cost burden on all healthcare systems, but only a minority of patients will respond to any specific treatment. 26:20 - The current practice of trial and error of drugs that have never even been tested in a clinical setting on a specific subgroup of autoimmune patients is wasteful and inefficient. 30:47 - AiArthritis encourages patients to get involved in clinical research by participating in the FORWARD National Databank or via other means. 31:27 - Visit AiArthritis.org/research for more information on how you can get involved in any of our research efforts. 33:33 - The concept of Precision Medicine sounds wonderful, but many patients are facing seemingly insurmountable barriers to access to care that may make them reluctant to participate in data collection efforts that might help move the field along. 38:16 - High costs of healthcare are driving access issues within all healthcare systems, so Precision Medicine should eventually - by way of reducing costs - increase access for all people. 45:18 - If patients could find treatments that better matched their specific conditions, they could improve their quality of life even if their disease is too advanced for remission to be possible. 46:00 - Tiffany and Catherine discuss pharmacogenetics. 49:43 - Pharmacogenetics has the potential to help match patients with the right pharmaceutical therapy based on their genome. 51:12 - Pharmacogenetics also has potential to anticipate drug-related toxicity before a patient develops an adverse reaction. 54:08 - Visit AiArthritis.org/research or aiarthritis.org/advocacy to get involved in promoting Precision Medicine. 55:01 - You can find Catherine @ChronicallyCatherine on social media or email her at chronicallycatherine@gmail.com.  55:35 - Find Young Patients' Area @yp_area on instagram or email them at youngpatientsarea@gmail.com. 56:29 - Tiffany thanks Catherine for her contributions to today's episode. 57:03 - Tiffany invites listeners to participate in any of the ensuing 360its following this episode. 58:12 - If you have something to say about today's episode, email us at podcast@aiarthritis.org or submit an anonymous comment at aiarthritis.org/rant. 58:56 - We are @IFAiArthritis on all social media platforms. 59:10 - Stay tuned for our brand new talk show website that will be premiering soon.   __________________________________________________________________ Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you'll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow. JOIN TODAY! AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot! 

In this revisit to the table (Step 5 in our problem-solving process), Tiffany, Katie, Effie, Eileen, and Kerry discuss the many layers around the word “arthritis” including: 1) Misunderstandings around the word that can lead to delays in diagnosis, family and friend judgements, and the different type associated with “AUTO” diseases; and 2) Complexities that exist when trying to identify the AiArthritis from other potential comorbidities (Osteoarthritis, bursitis, enthesitis) and how clarity about this could help with detection, access to the right treatments, and overall better health outcomes.    This conversation takes many turns, all which address issues identified from lived patient experience. Why is differentiating arthritis types important? How many of us referenced family history to expedite diagnosis? How does public, family, and even doctor misunderstanding of our diseases play into diagnosis and exploring potential comorbidities? How accurate is the literature in regards to arthritis prevalence in comparison to what patients report to be true? They even started brainstorming the development of a new tool that could help the public, patients, and health providers better understand the layers of our diseases as well improve communication and overall disease journeys.    Now it's YOUR turn to weigh in!  There's a lot to talk about, join us ‘at the table' so, together, we can change the stories of tomorrow! Submit your comments here, at podcast@aiarthritis.org, on our social platforms at Facebook, Instagram, Twitter, or LinkedIn @IFAiArthritis.    Show Notes: 00:53 Tiffany (CEO, non-radiographic axial spondylitis) introduces the show and co-hosts, Katie (Programs & Communications Manager, rheumatoid arthritis), Eileen (“Chronic Eileen” rheumatoid arthritis), Effie (“Rising Above RA”, rheumatoid arthritis), and Kerry (“Float Like a Buttahfly”, sarcoidosis).  3:13 Tiffany officially welcomes Elieen and Kerry as the newest recurring Co-Hosts! 3:37 Explains a new addition to the show - the “360its!”, where any topic or comment from the episode is eligible to spin off into different conversations in any communication format (facebook live, twitter,  4:37 Topic is around the word arthritis, as a Step 5 (revisit to the table) issue, because in the US it's Arthritis Awareness Month and May 20th is World AUTOimmune & AUTOinflammatory Arthritis Day 6:35 Co-hosts start the conversation by answering the question, “Why do YOU think the type of arthritis associated with our diseases - and differentiating it from other types - is so important?” All co-hosts share their stories and perspectives. 11:17  In the stories shared, the co-hosts outline a journey from “What's wrong with me?” to “Misunderstandings” to “public education” and “doctor education” and “overlap of types of arthritis (also Osteoarthritis) or other comorbidities.” If we (patients, public, families, doctors) better understood arthritis and the types we could improve detection, referrals, diagnosis and, in turn, improve quality of life, increase rates of remission, and lessen unnecessary disability. This can lead to better overall healthcare and improved costs for healthcare systems.  12:52 Tiffany opens the conversation to discuss anyone's experience with relatives having our diseases. Did anyone say, “Did you have a history of autoimmune/autoinflammatory disease in your family and, if so, did anyone say to you when figuring out what was going on with you, ‘Hey, this person has XYZ, maybe you have something in that family?” They continue discussing this and determine in their cases the connection between family history and detection/diagnosis was not common. This is an opportunity to discuss further because family history and communication about it could expedite diagnosis. 17:18 Kerry puts this perspective on the table - Not all families talk about things like illness, so in those cases knowing family history is hard. But given we know AiArthritis diseases are part genetic, this could be a key factor that could either lead to quicker diagnosis, or prolong diagnosis.  18:16 Kerry - Talking about the statement “It's all in your head” - “Once I had something visible - rash on my legs, swelling - I could say ‘I'm not making this up!” Bloodwork was fairly normal except a positive test for autoimmune thyroid, which led to a sign of diagnosis. But it took the visible plus some type of autoimmune direction in bloodwork to get there. Most agree, they only realized other family members had something similar after diagnosis. Could this be in part also because it's not understood by families that ANY of out 100+ “AUTO” diseases counts as family history? Tiffany explains the importance also of knowing family history, as newer research is moving towards prevention - or at least catching the disease very early - based on certain biomarkers + known environmental triggers + family history.  21: 12 Conversation continues about family history when it comes to the doctor visit (not asked). Often this leads back to the patient trying to push testing and googling what they have.  22:37 Group starts discussing delay in diagnosis journeys, including overlap of symptoms and the arthritic component, and how important the right diagnosis matters. A lot of delay in diagnosis for Kerry came from the doctors not understanding so self advocacy became necessary to help them figure it out. When you have a rare disease, less knowledge is often present and, therefore, more self advocacy necessary. 28:48 Effie revisits the topic of family history and how culture and heritage can impact conversation (“We don't talk about family illness.”). Or, in her case, as immigrants, a lot wasn't documented. This has, in part, encouraged her to start sharing her story to help others have those ah-ha moments. 31:11 There are different kinds of arthritis and some of us have more than one, which can lead to confusion in diagnosis (“You're too young to have arthritis”, “You're too old to have RA”) and family misunderstandings (“oh I have that too, it's not that bad”). They discuss why it's important for patients to know which type they have - or if they have more than one type. Also, how do we differentiate the systemic systems (part of our disease or comorbidity?) How does it overlap or is it separate? Is there a way to treat one differently than another and, if so, what should I know?  How do I identify where my pain is coming from and what am I doing to trigger this pain - did my meds stop working or is this something new? Also, since our diseases are systemic and affect organs, too - that plays into this as well. 39:05 This is a Step 5 episode, which means we have discussed these topics enough over the last year, including in this episode, to be at a point where we can head into Step 6 - which is creating a solution. In this case, a resource to help with identifying AUTO + Arthritis (and potential comorbidities) so we can improve detection, diagnosis, and disease management.  Things to consider in developing this tool: Name your pain. What kind of pain do I have? (joint, enthesitis, non-joint, fibro pain, bursitis pain?) Where is it located? (Symptom chart) What disease do I have? How can this resource be used to share with doctor? Make it patient-led, then doctors review. Potential comorbidities Include building vocabulary and considerate of families/juveniles 42:50 Group discusses why this tool is also important - often doctors will not connect the dots on their own. Kerry gives an example of a doctor considering pituitary gland involvement because, “That could cover many varied issues.” It's THAT line of thinking, “What could cover many varied issues?” that doctors need to consider. 44:04 “Those with sarcoidosis are thought to have lung involvement so if that's missing as a first symptom it may be missed.” The prevalence of arthritis, and what doctors believe is the correct percentage, may differ from patient-reported prevalence. They give examples of Sarcoidosis. It's thought that only 30% have arthritis, but Kerry hasn't met one person without it. Recently in Still's Disease (which includes systemic JIA), research has shown about 25% of patients do not have arthritis - especially as a first symptom. Yet the diagnosis triangle for Still's taught to doctors is look for arthritis, rash, high fevers. Is arthritis part of the disease or a comorbidity? 49:45 Katie mentions pain evolves in perception and simply getting used to it over time (pain is normal). How does this play into pain reporting? How does measuring pain and personal tolerance and mindset play into this? 55:25 What if the arthritis isn't so bad and it's the AUTO features that dominate. How can we communicate this? The group also discusses the importance of not eliminating arthritis as a clinical component altogether if it is or was part of your disease. (It's important for our tool. Is it earlier in their disease, later, a later comorbidity/OA developing?) 59:05 Tiffany wraps up the show, starting by inviting the audience to weigh in on the tool we started to brainstorm about in this episode. You can submit your ideas at podcast@aiarthritis.org, via messenger on social media @IFAiArthritis, social media posts about it. 1:01 Kerry, “Float Like a Buttahfly” can be found on Twitter and Instagram @ButtahflyK and on Facebook Float Like a Buttahfly; Effie Instagram and Twitter @RisingAboveRA and on YouTube RA and Myself, blog: RisingAboveRA.com; Eileen, “Chronic Eileen” can google this name and also writes for CreakyJoints, Healthline, and Arthritis Research Canada.  1:02:40 You can find AiArthritis at @IFAiArthritis on social media or on the web at aiarthritis.org/talkshow. While there please Tip the Team by giving a donation so we can continue providing this amazing resource! ___________________________________________________________________ Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you'll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow. JOIN TODAY! AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot!   

Join Tiffany and Deb, both persons living with AiArthritis diseases, then Tiffany and John O'Brien, CEO of the National Pharmaceuticals Council, as they put the topic of importance of innovation & treatment access in research and public policy 'on the table'. Learn how YOU can join efforts to impact change! Who is 'at the table'? Tiffany Westrich-Robertson, CEO AiArthritis, person living with non-radiographic axial spondyloarthritis Deb Constien, AiArthritis Volunteer, person living with rheumatoid arthritis John O'Brien, President & CEO of the National Pharmaceutical Council (NPC)   In this two segment episode, first join AiArthritis team - Tiffany and Deb - as they put a new show topic "on the table" for the first time: the importance of innovation in research and patient access to the treatments that are best for their individual characteristics. In this episode we introduce questions, like "Why does a treatment work for you and not me?" and "What if we don't tick all the boxes (are 'atypical', including having comorbidities) - how can I still access the best treatment for my unique needs?" The bottom line is that AiArthritis diseases are unique to the individual, and as a result, we may be better off using treatments that are not the same ones our health systems tell us we need to use. For change to happen, we need to hear stories from many patients (not just a few), but there are several barriers to achieving this. However, AiArthritis is working on a solution that involves creative, patient-led public policy classes focusing on four topics - two which are discussed today (innovation in research and value assessments). Listen to Deb and Tiffany explain more! In the second segment, Tiffany welcomes John to the table, as his organization - the National Pharmaceutical Council (NPC) - published a few of the reports AiArthritis is referencing in our courses. Together they explore how new research can lead to improved patient care and potential access to the right treatment for individualized need and based on patient-doctor decided management. Finally, they start the conversation about value assessments (a complex and difficult process of assigning value and cost to medications), highlighting both an understood need for healthcare systems to provide fair access to all, while considering patient uniqueness and the future of personalized and precision medicine.    Show Notes: Part One: Tiffany and Deb talk about the importance of innovative research and getting more patient voices involved in public policy (both which influence access to therapeutic care). :53: Tiffany introduces show, herself (nr Axial Spondyloarthritis), and co-host Deb introduces herself (Rheumatoid Arthritis and several comorbidities) 2:25: Tiffany explains the topic of the show today, which involves patients who are not typical, including those with many diagnoses or who do not “check the boxes”. 3:35: Today we will focus on the importance of being “average” and “not-so-average”. The time being now for all of us to come forward and speak out in regards to our access to therapies and disease management - through public policy and research efforts. This is especially important for those who don't tick the boxes, or a model, textbook perfect patient. 4:25: Tiffany mentions the second half of the show will feature a guest, John O'Brien, President & CEO of the National Pharmaceutical Council (NPC) who will be discussing their paper, “The Myth of Average”, and the importance of innovation in research and understanding value assessments (or the processes around health systems procedures that help determine which medications we are able to access). This is a problem when we don't all fit a ‘general patient population' when we are thinking about policies that are centered around access for the average - and in a time when we are moving towards a world of precision medicine (treating the individual). How can patients come to the table and make a difference so we don't lose access to options? 5:25: Tiffany and Deb discuss their patient journeys and, specifically, how they would not be considered ‘typical', or classified in the group of general patient population. “We are all unique.” Tiffany further explains how her current diagnosis did not exist a decade ago, so thankfully for research her disease now has a name and treatments that work well for her. 8:45: Deb and Tiffany discuss how different therapies work for different people, which is important to understand. “What works for you may not work for me.” 9:27: Tiffany asks listeners to think about the evolution of our patient journeys and, as a result, the importance of patients/supporters to stay connected with their legislators (people partially responsible for access to healthcare) over time so they can see that our diseases are not static. They often evolve and, in turn, our treatment needs can change. 11:40: Tiffany and Deb discuss the analogy of using cough medicine. Why is “your” cough medicine better? We need to realize drugs in the same classes work differently because they have various differences that, in turn, react differently in each person's body. “This is why AiArthritis is highly invested in precision medicine, or matching the right person to the right treatment at the right time.” We are also invested in personalized medicine, or personal preferences, which also factor in. 13:18: Tiffany states the organization's mission to help others, like them, have a voice - alongside other stakeholders as equals - so, together, we can solve problems that impact education, advocacy (public policy), and research.  13:45: Tiffany explains the role of ethics in healthcare access, referencing a paper she authored in 2015, the Ethics of Step Therapy, in collaboration with two bioethicists and “bestie” Kathleen Arntsen from Lupus and Allied Diseases, Inc., where AiArthritis learned all about the different roles of ethics for both health providers and doctors. She specifically explains the ethical Principle of Justice, which involves the responsibility to ration healthcare for all. “If we are going to see change, we need to meet in the middle, respectful of the agencies who need to consider access for all." 15:50: They discuss show design, in that this is the first time this topic was put ‘on the table'. In 2022, we are starting “360its”, or spin off episodes and segments that will be in a variety of methods and platforms so all people can contribute to this conversation (globally). Then, together, we can all be part of the solution in regards to healthcare access and desire for innovation to continue. Keep in mind, perspectives may vary depending on where you live. For example, in socialist societies, value assessments - which tend to favor general patient populations - may be more accepted. 17:05: They discuss research and ‘atypical' factors into this. Cost savings is often based on citing credible research, which is mostly conducted in general patient populations (or whomever signs up to participate!) 17:50: Patient stories are vital to helping legislators humanize health access issues, but it's always a challenge finding stories - or the stories are from the same people. So AiArthritis spent 2021 figuring out why and, as a result, identified several barriers to participation, including lack of clarity and confidence. As a result, AiArthritis is launching a patient-led creative classroom program in 2022 that will cover four topics, including innovation and value assessments. Goals: 1) Increase number of patients/supporter voices in public policy and story sharing (including demographic contribution), 2) Recruit our own organization ambassadors, 3) Build confidence, 4) Identify the issue in relationship to self and others (patient to patient invitation to learn how to have a voice).  30:10: They discuss how this conversation will 360it and how to get involved in this new program: https://www.aiarthritis.org/advocacy  30:55: Part of the program will involve a program library of resources, including featuring The Myth of Average publication by the National Pharmaceutical Council (NPC)- which is why we are talking to John from the NPC next. 30:23: Tiffany thanks Deb   Part Two: Tiffany and John discuss innovation in research and value assessments (measurements used, in some cases, to determine patient access to certain treatments)   31:39: Tiffany welcomes John to the show, who introduces himself and the NPC 32:58: Tiffany explains John is ‘at the table' because AiArthritis, who has developed a new patient-led public policy education program, is referencing several of the NPC's publications for the class library (including the Myth of Average). The piece is in keeping with AiArthritis' core priorities to help foster precision medicine and assess the right treatments for the individual. 35:42 John explains that innovation means the never ending search for cures and new treatments and why this resonates with him. Why does one treatment work for one person and not the other? Uses the example of Tiffany's journey, as she was diagnosed in 2009 before her disease had a name (nr-axial spondyloarthritis). So researchers were finding solutions for people like Tiffany, the Mystery Patient, and that's innovation. “This is all why it is essential that patients and researchers stay connected during the development process.” 39:00: Patients who are atypical, but who are lumped into the general patient population model, may risk being on the wrong treatment and that can have negative consequences. “Putting me on the right treatment that was indicated for my disease made a world of difference. It was like night and day.” 40:07: Tiffany tells us a story about her quality of life challenges prior to access to the right treatment, which involved the inability to get out of bed in the morning.  40:53: Also, people like Deb - who have exhausted all treatments - what do these patients do?  Patients like us need to understanding the importance of research and the public policies that can influence our access to the treatments best for our individual needs. Join AiArthritis' efforts at https://www.aiarthritis.org/advocacy  42:15: John talks about the importance of the patient-doctor decision for treatments, which can be sidetracked if the healthcare system does not cover that therapy.  Researchers ask, “Why do different individuals have different responses to the same treatments?”  Furthermore, if the treatment was designed for the general patient population, how will this impact a patient's access to their doctor recommended therapy? The Myth of Average report highlights that age, genetics, ethnicity, behaviors, biology, and other individualized factors are not always considered when rationing treatments on a population level. “Patients should have access to the treatment that their doctor believes is clinically relevant for them.” 48:00: Tiffany talks in detail about AiArthritis' Ethic of Step Therapy investigation (2015) - which has relevant takeaways regardless of health system (location): patient-centeredness, fairness, clinical relevance.  They revisit the Principle of Justice (from Part One with Deb) The ah-ha moment that led to the conclusion of the paper was a result of Tiffany's inability to be included in clinical trials because she was an atypical patient. She realized that clinical trials include patients who meet a general patient population criteria - the same research that insurance companies cite to justify their cost savings. However, in cases like Tiffany - where the patient is atypical - then the decision should default to the doctor, who is ethically obligated to treat to the individual characteristics of the patient. “Drop mic.” 50:44: This ethics paper led to the research work - and public policy work - we do at AiArthritis, in part, because a lot of money goes into this research using the general patient population, yet only 40-60% will respond once that drug goes to market (because the rest of us are atypical). “We need more treatments” for the rest of us. Shout out to Autoimmune Association and the Let My Doctor's Decide Initiative, which AiArthritis serves as an advisor.  52:02: John tells a story about how patients/supporters often understand the mechanisms of their disease and the different treatments researchers as well as the company themselves. “So not just at this table, but we have so much to learn from each other - especially when it comes to what the condition is like in the real world.” 53:25: John talks about health technology assessments (value assessments), what they are - including some access barriers they may cause (due to lack of transparency, caregiver burden, and drug measurement vs personalized experiences). Provides an example of employer based insurance (USA) if an employee is unable to work due to inability to access the best treatment for them. 55:42: John defines health technology assessments (HTAs), including the history of them and further discusses Quality Adjusted Life Years (QALYs) - which in his opinion can be discriminatory for people living with disabilities.  1:00:08: There is a need to cut costs and have a well distributed system of rationing spending. Even on some HTA websites in their own explanation of how these work they state the process is not designed for the individual but rather for the population. However, in a world that's moving towards precision medicine, and considering the patients who have exhausted all treatments, how do we ensure value assessments can be fair and considerate of the new science? They further discuss the QALY. No one is telling employers who are choosing health plans (USA) that if their employee isn't able to work because they don't have access to the right treatment that it could end up costing them more in time off, hospitalizations, and overall less work production. “This is the risk of using QALY's when trying to establish population based coverage decisions.” Tiffany confirms that it's difficult to work if you have brain fog, pain, or fatigue. 1:03:35: Tiffany reminds the audience that now in 2022 we are spinning off from each episode - any bullet point, any topic segment - and continuing the conversation in a variety of ways so we can include all of you in the conversation. Called #360its. Patients, supporters, legislators, researchers, pharma, etc - we need you all at the table! “The people who I always learned the most from are the patients.” Patients need to share their experiences.  1:06:00: Tiffany mentions a good 360it would be to discuss the continued need to use shared decision making in healthcare (patient-doctor decisions), because that is also relevant in regards to accessing the treatment that may be innovative and new (if that is the right treatment for us). Personalized and precision medicine consideration. 1:07:20: The research the NPC does is to help patients gain access to medications and foster innovation. “What If Groundbreaking Medicines Never Existed?” paper, which outlines where we would be today without drug innovation. Tiffany suggests that people read this, then let's do a 360it to discuss. 1:09:15: Tiffany reiterates the reason John is here is because the work the NPC does is in line with our AiArthritis work to fight for precision medicine (access to the right treatments at the right time for the individual person's needs). As such, we are including a few of their reports in our resource library in our new patient-led public policy education program. Learn more and sign up at https://www.aiarthritis.org/advocacy.  1:10:10: Tiffany thanks John for pulling up a seat at the table. 1:10:31: Tiffany closes out the show. If you like the show and listen on your favorite podcast station, please subscribe and give us a rating.  Find all the episodes at our website at www.aiarthritis.org/talkshow  Also, if you want to help us continue offering this program, please consider a donation, because your support makes this show possible! Find us on all social media channels at @IFAiArthritis where you can message us to have a seat at the table or email us at podcast@aiarthritis.org. _____________________________________________________________________________________________________________   Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you'll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow. JOIN TODAY! AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot!     

A revisit to the table with Deb Constien, Estela Mata, and Tiffany Westrich-Robertson as they continue discussing the dynamics of support - including needs of the patient as well as others in the patient's support circle. Building on Episode 43 and Episode 48, they start a support tracking tool to help patients and families/friends better assess their needs and how, together, we can work to address them!  You're invited to help us continue developing this aid - find out how! *All our main 1st Sunday of the month episodes are either an initial "put the topic on the table" episode (Step 2 in our organization's 6-step problem solving process) or a "revisit to the table" episode, where we build on a past show because we have moved forward in developing help, tools, or projects around the issue (Step 5 in our organization's 6-step process). Learn more about our process and mission.    Show Notes: 0:55 - Welcome & introduction by Tiffany Westrich-Robertson 1:28 - Introductions to Deb and Estela 1:45 - Estela is a Founder of Looms 4 Lupus, an organization that focuses on the supporter network for lupus patients and others with chronic illness. 2:34 - Deb is a recurring co-host and long term dedicated AiArthritis volunteer. 3:35 - Tiffany explains the mission of the show to put a topic 'on the table' OR revisit the topic, which is what this episode is about.  It is based mostly on Episode 43 It's a Family Affair (https://www.aiarthritis.org/talkshow-ep43). This is a step “5” in our six step process (learn more about the stepshttps://www.aiarthritis.org/about-us). 4:54 - The support person can be a family member or a friend, who will have diverse support needs depending on their personalities and coping skills (among other things). 6:11 - Tiffany explains the addition of the #360it to the episodes. Expanding the show to as many formats as we can to keep the conversation going, so that all people can truly have a seat at the table. 8:35 - Estela discusses the impact of Juana's diagnosis, including the different reaction of the family members. 11:08 - They talk about the importance to figure out roles and how to give support from each perspective and personality. This includes "Supporting the support" - helping the spouse and the children figure out what support they need. Also, what can we all do to address support needs for different people? 12:25 - Deb shares a similar story about her family members response to her diagnosis. (her mothers guilt, and the “cheerleader” role of family members). 13:40 - Communication plays a big role because needs can vary so much and change over time. 14:04 - Sometimes people need to go outside of their family circle to get the support that they need. Friends can be your primary supporters. 15:40 - Deb shares a story about an early experience with her husband, who left her after surgery with a toddler and other complications. While she 'gave hints' he should come home, she learned he needed more information regarding how she needed to be supported.   19:20 - Tiffany talks about the evolution of roles and communication dynamics with your support systems over time. She introduces the start of a guide to help identify your support network and the roles they play in the journey. Step One: Who is in your Support Network? 21:28 - Deb's provides examples of her support system, which includes her extended family members, friends, and church family.  This leads to Step Two: Assign Roles. 23:04 - Estela and Tiffany expand into Step Three: What are the needs of each person? Once you identify your supporters then determine who you think you need to go to for each need. Be sure to communicate with each person so they are clear about your expectations. 30:23 - Tiffany mentions considering Step Four: Evolution of Needs, which includes disease journey shifts and new people entering your Support Network. 33:26 - Remember, it's a learning curve for everyone. There will be trial and error but just be patient with each other. People take their own meaning from things, so miscommunications happen. Have a discussion (even repeat back to confirm) to make sure everyone is on the same page. You have to reassess every time to prevent resentment and misunderstandings. Not everyone can fill every support role- and that's okay.  38:32 - Deb addresses disease misunderstandings as a main cause of patient needs for support. She suggests developing a QR code for people to immediately have access to information on our conditions. 40:46 - They discuss additional things to consider, such as learning more about the disease, symptoms, treatments, as well as considering various means of providing support. 47:30 - Tiffany invites listeners to contribute to building this tool and using it.   VIEW OUR OUTLINE HOW TO START YOUR SUPPORT AID HERE     48:00 - Tiffany explains how we are going to "#360it" this episode. 49:08 - Estela's sister, Juana, will host one of the #360it spin offs, focusing on the supporter switch (when the patient turns into a caregiver, for example, motherhood.) 50:16 - #360it spin off episodes can go anywhere -  Twitter chat, tiktok, Facebook posts, mini episodes - and can be done by ANYONE! If you want to add to this conversation by sharing your recommendations or stories let us know. You can also just tag us on social @IFAiArthritis and use the hashtag #360it.  52:00 - You can find Estela and Looms for Lupus on Instagram, Twitter, and Facebook @looms4lupus, and Estela on Instagram, Twitter, and Facebook @estelamata. Don't let the name fool you, they focus on all autoimmune conditions, overlapping mental health conditions and are here to support you. What all these conditions have in common is the need for all of us to support one another!   Find all our projects at www.aiarthritis.org/initiatives and make sure to sign up FOR FREE (all stakeholders) to our AiArthritis Voices program to learn about all our opportunities to be at the table! www.aiarthritis.org/aiarthritisvoices.   Also please consider a donation to the show by Tipping the Team! We can only continue providing resources like this show with the support of our community. DONATE TODAY!   ________________________________________________________________ Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you'll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow. JOIN TODAY! AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot!    _____________________________________________________________________________   Related Episodes: 

In this episode, AiArthritis CEO and person living with Axial Spondyloarthritis - Tiffany Westrich-Robertson - and Dr. Lisa Zickuhr - rheumatologist from Washington University - continue the conversation around shared-decision making and its importance around patient-rheumatologist communication. They focus on a research project both are involved in, and that YOU can join! The project aims to explore patient-reported and rheumatologist-reported barriers to virtual care and, in turn, work towards developing shared-decision making guidance for rheumatologist to adopt in e-health situations.  They also took the opportunity to break out into a segment on COVID-19 and shared-decision making, This segment will be separated from the main show soon, available as it's own minisode, as a "360" spin off from our RheumyRounds and COVID-19 & AiArthritis episodes.    SHOW NOTES 00:54 - Tiffany welcomes listeners. 01:04 - Tiffany is the CEO of AiArthritis, one of the many patient co-hosts from around the world, and a patient living with non-radiographic axial spondyloarthritis. 1:30 - Tiffany is joined today by Dr. Lisa Zickhur, rheumatologist from Washington University Rheumatology and the school of medicine. Lisa also has an interest in education and helps train fellows, or “doctors in progress.” 2:41 - Currently Lisa is working with Tiffany and AiArthritis on a shared decision making project - especially in the virtual environment, which is the topic revisited today. 4:50 - Tiffany revisits the methodology of the show, explaining there are 6 steps to all the work done at AiArthritis and the talk show episodes fall into Step 2 or Step 5. Community input happens in Step 3, which we also circle back to after Step 5. Step 6 is when we create resources based on all the input. 5:31 - This is a Step 5 episode 5:50 - Lisa explains her experience in shared decision making and teaching rheumatology fellows. 6:46 - Tiffany revisits the first episode where we “put the topic of e-health on the table” after she and fellow patient Co-Host, Deb, attended EULAR 2018.  7:45 - Shout out to Dr. Auralie Najm, who was speaking at EULAR 2018 about e-health, where there was a debate that e-health was still at least a decade away from implementation. 9:01 - E-health is thrust upon us in 2020,  around the time shared-decision making builds in popularity. 9:44 - Shout out to Dr. Al Kim, or Dr. Al, or “just Al”, also from Washington University, who also discussed patient-doctor communication in the original RheumyRounds series, which included addressing “Dr. Google”.  But with COVID onset, patients stopped coming to office visits with knowledge and instead turned to their doctors for complete guidance. 10;31 - Lisa speaks from the doctor's perspective regarding early COVID challenges. 11:07 - Tiffany and Lisa talk continue discussing how shared decision making has evolved and now “it's everywhere.” And it's why it's so important right now. 12:25 - Doctors aren't all still great at shared decision making and it's good practice for patients to learn how it works and how to engage in it. 13:02 - AiArthritis already has several projects, including this new one with Lisa and Washington University, underway. Learn more at www.aiarthritis.org/initiatives or sign up (FREE) for AiArthritis Voices to stay informed of all opportunities we have: www.aiarthritis.org/aiarthritisvoices.  13:46 - They are also creating tools to help teach patients, fa 14:09 - Lisa talks about another project just completed around e-health, which was to take general telehealth competency guidance and revise it to be more meaningful in rheumatology virtual visits (and for use by rheumatology fellows in training). Some were specific to shared decision making. Tiffany was the one patient representative on the panel of twelve. 17:30 - Lisa tells the audience about the new project Washington University is working on with Tiffany from AiArthritis, along with Catherine McCarthy from the Veterans Hospital and Emma Nolan-Thomas who is a medical anthropology student (and person living with Sjogren's Syndrome), which aims to identify the best shared decision making practices in virtual rheumatology encounters.You can get involved by signing up at www.aiarthritis.org/initiatives.  19:29 - Tiffany further explains a methodology originally developed by AiArthritis, where patients - trained as professional focus group moderators help facilitate the research. This is incorporated into the Washington University project, with Tiffany as one of the moderators.   21:39 - Special shout out to Washington University for their work including patients as partners in their work. 24:39 - How to get involved in the Washington University project. These focus groups are underway. If spots fill up, you can still be part of the conversation with AiArthritis on this topic. Just sign up to learn more about this and our other research projects at  www.aiarthritis.org/research.   26:32 - TIffany and Lisa break out to discuss the importance of continued shared-decision making as COVID-19 vaccination recommendations continue to evolve. They specifically cover the topic of the 4th vaccine for persons immunocompromised.  This is going to become its own “360” spin off segment under our RheumyRounds series.  38:44 - AiArthritis has created a letter for patients having issues gaining the 4th dose to share with pharmacies. You can find this and other guidance at www.aiarthritis.org/covid19  41:00 - Tiffany and Lisa close out the episode. Tiffany mentions to visit us on social media at @IFAiArthritis all platforms, email us at info@aiarthritis.org, and please support the show with a donation on our website! www.aiarthritis.org/donate.  Find all our projects at www.aiarthritis.org/initiatives and make sure to sign up FOR FREE (all stakeholders) to our AiArthritis Voices program to learn about all our opportunities to be at the table! www.aiarthritis.org/aiarthritisvoices   ________________________________________________________________ Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you'll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow. JOIN TODAY! AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).  Be sure to check out our top-rated show on Feedspot! 

In this episode, Tiffany Westrich-Robertson (AiArthritis CEO) and Katie Simons (Senior Programs & Communications Manager) talk about the heart and soul of our organization - the volunteers! Meet five volunteers from around the world - Deb, Katie, and Leslie from the United States, Pooja from India, and Judy from Australia - hear from them just how much they've accomplished by joining our team and the impact they've helped us achieve!  Learn more about many of our programs and ways YOU can get involved in 2022! Patient voices and all other stakeholders welcome!   Learn more about the following programs mentioned in the episode: AiArthritis Voices AiArthritis Voices 360 RheumyRounds A Community Team (ACT) - first immunology Innovation in Research winner, Celgene 2015 A Community Team (ACT) II - utilizing data from atypical patients to justify when it's time to ensure treatment decisions are made by their doctors, who are ethically obligated to treat to the individual needs of patients.  World AiArthritis Day Still's Disease Awareness Day Preparing Patients for Precision Medicine COVID19 - Actemra Shortage COVID19- Shared Decision Making Go with Us to Conferences NEW IN 2022 - Advocacy/Public Policy Creative Patient-Led Learning! Sign up to volunteer at aiarthritis.org/volunteer !   Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!   If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you'll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow. JOIN TODAY!   AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org). Be sure to check out our top-rated show on  Feedspot!

In this episode, AiArthritis CEO - and person living with axial spondyloarthritis - throws a topic on the table that everyone can relate to...ranting. We all experience situations of frustration, when something we believe in, we want to happen, we wish could be different hits the point where we must vent. Sometimes that vent is to ourselves, other times it's public for all to see. We rant for support, to bring change, to be heard, or to get something off our chest. Regardless of the reason, sometimes it's just necessary.  Tiffany introduces two issues that are directly related to ranting. The first builds on years of wanting for Patient Organizations to be more accepted and involved at American College of Rheumatology (ACR) annual conventions. Are you affiliated with a Patient Organization - anywhere in the world - part of the rheumatic or musculoskeletal disease community and interested in uniting with other groups so, together, we can work towards more inclusion in future ACR meetings? Then CLICK HERE to sign on. OR, if you are affiliated with a research collaborative group (research institute, databank, government) and would like to sign on to support increased Patient Organization participation in future conferences, you are also invited to sign.  SIGNATURES REQUIRED NO LATER THAN DECEMBER 15TH, 2021! A letter just for patients who want to have a voice in future advancement of a Patient Track at future meetings - this will be available in January 2022! Then, Tiffany introduces a new initiative at AiArthritis - Caution: Rant Ahead! Realizing there is no where in our community for people affected with AiArthritis diseases to vent privately, we started a venting platform. Submit your rant, which will not be visible to others outside of our organization. Submit anonymous or leave your name and email, it's up to you. Rants submitted may be discussed on future episodes of this show, on social media, or if enough patients rant about the same issue then maybe even a project! Submit your own rant here: https://www.aiarthritis.org/rant    Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!   If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you'll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.   JOIN TODAY!    AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).   Episode 68: RANT AHEAD! Together We Cannot Fail 00:52 - Tiffany welcomes listeners. 01:06 - Tiffany is the CEO of AiArthritis and a patient living with non-radiographic axial spondyloarthritis. 05:28 - One of the programs we have at AiArthritis is “Go With Us to Conferences” which is an initiative to bring patients with us to the two major scientific conferences we attend every year:  ACR (American College of Rheumatology Annual Conference) and EULAR (European Alliance of Associations for Rheumatology). 07:20 - This year when Tiffany registered the team attending for 2021, she was annoyed that there was no pass option for Patient Organizations. 09:28 - AiArthritis did not want to attend as sponsors of a booth as we have in past years because our team cannot attend the sessions if they are working a booth. 12:10 - ACR offered passes only for individual rheumatology professionals and members of the press. 14:08 - ACR has an extensive list of individuals who should be members, but patients, patient representatives, and patient organizations are not included on the list. 15:09 - Tiffany made a post on Facebook about her frustrations that patient organizations are excluded from the ACR Annual Conference and Membership. 15:23 - The post received a lot of attention from other patient organizations and patient advocates who have also experienced feeling unwelcome by the ACR. 15:44 - The ACR contacted Tiffany and scheduled a meeting to discuss her concerns. 17:00 - ACR has agreed to include patient representatives and patient organizations in membership and registration options moving forward. 19:52 - There is an open letter other patient organizations can sign on or before December 15, 2021. 21:18 - A letter for patient representatives will be available in January of 2022. 21:34 - You can find all the sign-on letters at aiarthritis.org/ACR 21:43 - This experience led to the realization that patients need a place to rant about issues they are facing in the AiArthritis community. 22:18 - AiArthritis is adding a button on our website that patients can use to rant or vent privately about problems they are having without judgement. 22:37 - Topics that receive the most traffic via this button will become show topics and organizational initiatives. 23:11 - This feature can also be found at aiarthritis.org/rant. 23:27 - Find us on the web at aiarthritis.org or @IFAiArthritis on all social media platforms.   Be sure to check out our top-rated show on Feedspot!  

This week join your recurring patient co-hosts Tiffany Westrich-Robertson, Katie Simons, and Deb Constien as they discuss the importance of making informed decisions in the management of aiarthritis diseases in unprecedented times. Our hosts will tackle this issue - as well as the related Actemra shortage, which is forcing patients, like Deb, off of the medications that work best for them in order to accommodate hospitalized COVID patients (most which are unvaccinated). In order to participate in shared decision-making, patients must have access to accurate and updated information about treatment options, vaccinations, and other pressing health concerns. But how do you know the information you are receiving is accurate in a world where anyone can publish a study without peer review or share a fake website on social media? How do you make the decision that is best for you, your family, and your community when faced with opposing messaging from multiple sources? And what happens when other people's poorly-informed decisions impact your access to the medicine you need to function? This is an important episode for everyone to hear whether you are a longtime patient with an aiarthritis disease or a member of the public with no known connection to an aiarthritis patient. Decisions have consequences, and sometimes the consequences impact other people you may not even know. Please read our Press Release about the Actemra shortage and share with others so they can make fully informed decisions about vaccinations!   Episode 67: Show Notes 00:52 - Tiffany welcomes listeners. 01:12 - Tiffany is a patient living with non-radiographic axial spondyloarthritis. 01:30 - Today Tiffany is joined by fellow patient co-hosts Deb Constien and Katie Simons. 01:56 - Deb is a patient living with Rheumatoid Arthritis since the age of 13. 02:58 - Katie is a patient living with Rheumatoid Arthritis. 03:51 - Today's episode is about making informed decisions in unprecedented times. 04:22 - Tiffany reviews the mission of AiArthritis, as well as the way we tackle initiatives. 07:39 - Deb has been having success with Actemra infusions, but there is currently a shortage as hospitals are buying all of the available doses to treat COVID-19 patients. 09:36 - Deb has significant damage in her hands from long-term RA, so she is not able to administer her own injections. 10:42 - Actemra infusions are stronger than Actemra injections, and rheumatologists are not able to modify the dosage of the injections to make them stronger. 12:16 - Social media is a source of news alerts for many people, but not all of the information they are getting is accurate or clear. 13:51 - Different countries are in different stages in terms of COVID-19 spread, vaccination availability, and medication availability. 16:00 - It is important to pay attention to local news to be informed about vaccine availability because it varies so much based on location. 16:47 - AiArthritis maintains a COVID-19 web page for updated information and current recommendations for immunosuppressed people at aiarthritis.org/covid 18:30 - Deb is in more pain since switching from Actemra infusions to Actemra injections. 19:01 - Genentech is the manufacturer of Actemra, and Deb wonders whether they will increase production of Actemra infusion medication so she can get back on her medicine. 21:03 - Shared decision-making is talking to your rheumatologist, getting all of the information, and then making the best decision together for your treatment based on your individual needs and preferences. 23:22 - Katie's medication is also on the list of those being used for COVID-19 patients, and she is worried that shortages may impact her as well in the future. 24:26 - Patients are also concerned about upcoming shortages of injectable medications. 25:15 - AiArthritis patients require their medications to function on a daily basis. Their quality of life will be significantly negatively impacted if they cannot access their medications. 26:00 - AiArthritis medications are not interchangeable. What works for one patient does not work for another. Patients cannot just swap medications without consequences if their medications are not available. 27:03 - Actemra is the only drug approved so far for treating hospitalized COVID-19 patients. Hopefully as more drugs are approved, shortage issues will resolve. 27:25 - A high percentage of people who are hospitalized and needing Actemra are unvaccinated for COVID-19. 27:51 - When deciding whether or not to get a COVID-19 vaccine, AiArthritis asks you to consider that if you contract COVID-19 and require Actemra treatment, you are taking medicine away from people who need it. 28:44 - Biologic injections and infusions are complicated to manufacture and take a long time to produce. 30:03 - Some of the Actemra shortages are due to hospitals stockpiling the medicine in anticipation of needing it. 31:36 - AiArthritis patients should not have to sacrifice their quality of life because there are enough vaccines and medications to go around if everyone is making responsible choices and not hoarding. 34:16 - It can take 3-6 months for a new medication to take effect (if it is even going to take effect), and that entire time patients are incurring more damage. 40:50 - Educate your family and friends about the impacts to the AiArthritis community of choosing to not be vaccinated for COVID-19.  43:49 - The Actemra shortage is a crisis situation for the AiArthritis Community, but it hasn't been well publicized, and not everyone understands that their decision to not be vaccinated is hurting other people. 46:01 - Misinformation is everywhere, especially on social media. 46:23 - Much of the information online has not been peer-reviewed because the situation is changing so fast, and everyone wants to publish their findings immediately even without corroboration. 48:53 - While a lot of information is constantly changing, one fact we know to be true is that the majority of people hospitalized with COVID-19 are unvaccinated. 49:19 - The CDC just published information indicating that no other demographic indicator made people more likely to be hospitalized than simply being unvaccinated. 50:59 - AiArthritis will be taking a team to the American College of Rheumatology 2021 Conference, and you can participate remotely by following along via the “Go With Us to Conferences” program on our AiArthritis Voices platform. 55:01 - To sign up for AiArthritis Voices, visit us online. 55:13 - You can also access the “Go With Us To Conferences” feature here. 56:10 - For updated information specifically on the Actemra shortage, you can follow our coverage here. 56:37 - You can always find us on social media @IFAiArthritis on all platforms. Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!   If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you'll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.   JOIN TODAY!    AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).   Be sure to check out our top-rated show on Feedspot!  

This week join your patient co-hosts Tiffany Westrich-Robertson, Cheryl Koehn, and Maarten de Wit as they introduce us to the Pathway of Patient Engagement in Rheumatology Research. Tiffany is the founder and CEO of AiArthritis. Cheryl Koehn is the founder and President of Arthritis Consumer Experts - Canada's largest patient organization. Maarten is the Chairperson for the Study Group for Collaborative Research for EULAR (European Alliance of Associations for Rheumatology).  Tiffany, Cheryl, and Maarten are all leaders of the ACTion Council - an organization dedicated to preserving the past and advancing the future in patient-involved rheumatology research. The ACTion Council consists of stakeholder groups from patient organizations, health charities, coalitions, non-pharmacologic researchers, government agencies/initiated programs, and industry. Between 60 – 75% of those invited to participate have engaged in research collaboration as patient stakeholders.  Today's episode is about the Pathway of Patient Engagement in Rheumatology Research, the first deliverable produced by the ACTion Council. The purpose of the initial Pathway is to trace the evolution of patient engagement in rheumatology research, including identifying historical milestones, novel “firsts”, and tools. Then, as patient involvement continues to popularize and branch off into different directions, new entries can be added. New entries will be collected and added in the second half of 2021, and the Pathway will be updated bi-annually. Tune in to this episode to learn why the Pathway is important, how it can be helpful to you as an AiArthritis stakeholder, and how to avoid tokenism when you want to participate as a patient research partner in rheumatology research.  Now, if you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join Katie, Deb, and all the other recurring Voices 360 co-hosts to continue this conversation inside our coordinating AiArthritis Voices online community - where patients unite with others around the world to talk, learn, and connect.  JOIN TODAY!   AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org) to have your seat at the table.     Episode 66: The Pathway of Patient Engagement in Rheumatology Research   00:52 - Tiffany welcomes listeners. 01:20 - Tiffany is joined by fellow patient co-hosts Cheryl Koehn and Maarten de Wit 02:24 - Cheryl is a person living with Rheumatoid Arthritis and works for Arthritis Consumer Experts - Canada's largest patient organization. 04:29 - Maarten is a person living with Psoriatic Arthritis and the Chairperson for the Study Group for Collaborative Research for  EULAR (European Alliance of Associations for Rheumatology). 07:40 - Today's episode is about Patient Engagement in the Rheumatology research space and the Pathway of Patient Engagement in Rheumatology Research as developed by The ACTion Council. 08:44 - Tiffany explains the origin of the Pathway project. 10:36 - Cheryl explains how she originally became involved in research collaboration. 18:02 - In 2017, AiArthritis organized a roundtable of the people most involved globally in patient engagement in rheumatology research. 20:13 - The Pathway to Patient Engagement was created by a group of stakeholders that grew out of that roundtable meeting called The Action Council. 21:18 - The Action Council is a patient-led initiative, and 70% of the members are patients living with rheumatic disease. 23:10 - A patient research partner (a term coined by Maarten originally) is a patient who has an equal role on a research team, collaborating on an equal level with other researchers at every stage of the research. 25:41 - The goal of patient research partners is to make the research more patient-centered and more fitting of patients needs and beneficial to improving patients' daily lives. 25:55 - Patient research partners should ideally be co-authors of the final research publication. 27:21 - Cheryl believes that incorporating patient research partners and having them co-author research publications is the “moral, ethical thing to do.” 27:39 - Living daily with arthritis requires a lot of skill that non-patient researchers do not possess. These skills are fundamental to good research. 29:28 - The patient engagement / patient researcher model must be strategic, scalable, and sustainable. 32:40 - One of the goals of the Pathway is to avoid Tokenism in research initiatives. 33:25 - Simply mandating patient involvement in research doesn't work due to problems with tokenism. 34:21 - Creators took care to make the Pathway a user-friendly instrument. 35:03 - Mandating patient engagement in research (for funding) is necessary to get researchers to change their methodology, but it is incumbent on the patient community to safeguard against tokenism. 36:38 - One thing you can do to safeguard against tokenism is to refuse to cooperate with any research project trying to recruit patients at the last minute before a funding deadline. 37:35 - If you are offered a position on a research team that does not include co-authorship, refuse it. 37:51 - If you are not given a power title, you will not hold power in the project. 38:26 - The Pathway is a great place to learn if you are new to patient participation in research, but it is also a great place to find models for research if you are already a leader in patient research. 39:59 - Community-led research can be valid, published research even without major research organizations or funding sources involved. 41:24 - You can find the Pathway at rheumactioncouncil.org or on social media @rheumcouncil. 43:43 - There are videos on the website that explain in detail what the tool is and how to use it. 47:04 - Any stakeholder can contribute to the Pathway. 48:16 - You can also find any of our previous podcast episodes at aiarthritis.org/talkshow or on any podcast platform. Be sure to check out our top-rated show on Feedspot!  

This week join your recurring patient co-hosts Katie Simons and Deb Constien as they discuss the experience of being diagnosed with arthritis as a juvenile and the importance of differentiating between the different types of AiArthritis diseases. Katie is the Senior Program and Communications Manager for AiArthritis and a patient living with inflammatory arthritis. Deb is a dietitian, an experienced patient advocate and ambassador for the AiArthritis community, and a patient living with inflammatory arthritis. They both discuss the complicated nature of identifying just precisely what their diagnosis is as adults who were originally diagnosed with a juvenile form of arthritis.  This episode will tackle subjects of particular importance to the AiArthritis community such as differentiation of disease types, early intervention, shared decision-making, Stills Disease Awareness, and the experience of living with an invisible illness. Life with an invisible illness can be particularly challenging for children and adolescents, and our co-hosts share their experiences as teens faced with a new diagnosis and limitations. For more information on living with an invisible illness, check out Episode 12: Invisible Disease. After you listen to this episode, we want to hear from you to keep the conversation going. If you were diagnosed as a young person, are you still using the initial diagnosis?  Have you changed the way you describe your condition to others since becoming an adult or since the medical community changed the name of your disease? How do you feel about having an accurate diagnosis or about changing your diagnosis?  Now, if you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join Katie, Deb, and all the other recurring Voices 360 co-hosts to continue this conversation inside our coordinating AiArthritis Voices online community - where patients unite with others around the world to talk, learn, and connect.    JOIN TODAY!   AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org) to have your seat at the table.     Episode 65: Young and Invisible 00:53 - Katie welcomes listeners. 01:16 - Today's topic is about being young and diagnosed with an invisible illness, as well as the importance of differentiating between the different types of AiArthritis diseases. 01:31 - Katie is joined by Deb, a recurring co-host who was diagnosed with RA at age 15. 02:05 - Katie was also diagnosed as a juvenile with JIA (juvenile idiopathic arthritis). 02:52 - Both Katie and Deb were treated by an adult rheumatologist because pediatric rheumatologists are very rare if they are available in your community at all. 03:20 - Deb and Katie share their respective diagnosis stories. 09:56 - It can be difficult for juveniles to get peer support because most people assume arthritis only affects elderly people. 11:07 - Friends sometimes stop inviting patients to participate in activities because they don't understand the physical limitations of people with AiArthritis. 12:25 - Juvenile arthritis patients may find it difficult to continue activities they had previously enjoyed because of pain and fatigue. 14:48 - We want to hear from our listeners: If you were diagnosed as a young person, are you still using the same diagnosis?  15:12 - Stills Disease Awareness Day is coming soon. 15:24 - Stills Disease is actually an umbrella term that encompasses Systemic Juvenile Idiopathic Arthritis and Adult Stills Disease (the difference being whether you were diagnosed before or after age 16). 17:55 - Katie was diagnosed with JRA, but she generally refers to her disease as simply RA or arthritis since becoming an adult. 19:27 - Getting an accurate diagnosis can take many years because doctors don't believe the patient or symptoms are not obvious or the symptoms do not match any one specific diagnosis readily. 24:01 - Early intervention is critical if the patient is ever going to achieve remission, so identifying the appropriate screening tools and making sure all AiArthritis patients receive them is very important. 25:56 - Especially in very young children, persistent parents are critical to getting an accurate diagnosis and early intervention. 29:37 - Patients living with AiArthritis diseases sometimes feel like they are just waiting for their condition to deteriorate. 30:06 - New medications for AiArthritis hitting the market provide hope for all patients to improve. 33:16 - With regard to changing medications, having surgeries, or any other therapeutic decisions, it's important that the patient be emotionally ready to proceed. 35:50 - Shared Decision Making between patients and rheumatologists helps ensure that patients are comfortable with the therapeutic choices being made for their care. 37:22 - To continue this conversation, join us in the Facebook group for the talk show. 37:28 - You can also find us on all social media platforms @IFAiArthritis. 38:43 - You can also find any of our previous podcast episodes at aiarthritis.org/talkshow or on any podcast platform. 39:04 - Or message us via social media or email us at podcast@aiarthritis.org. Be sure to check out our top-rated show on Feedspot!  

In this episode, Tiffany, Deb, Patrice, and Katie - all persons living with AiArthritis diseases - attended the 2021 European Alliance of Associations for Rheumatology (EULAR) Scientific Congress and convened several times over a few weeks to review the sessions most relevant to our community and to the work we do at our organization. The sessions reviewed in this segment involved "patient-rheumy communication", which we were happy to see covered so much at the conference! So, while historically all of our debriefs are patient-led only, we decided for the first time to invite two rheumatologists to 'zoom bomb' our discussion. In this review, join Tiffany, Deb, Katie, and Patrice AND Al and Jeff (Dr. Al Kim - Tiffany's own rheumy - and Dr. Jeff Sparks)  as they talk about the EULAR session content around communication and office visit needs (patient side and rheumy side). Shared-decision making and the evolution of visits to include discussions on comorbidities (and multi-morbidities) AND associated "holistic" approaches was also visited. Dr. Al Kim ("Al") is from the Washington University School of Medicine and Dr. Jeff Sparks ("Jeff") is from the Harvard School of Medicine. They were invited to zoom bomb our session right as we were giving our opinions about our rheumy visits. Hey, we need all voices at the table for these conversations, right?!   Today's show is a segment from our "Go with Us!" to Conferences series, EULAR 2021 Scientific Congress patient-led debriefs, all which can be viewed in full on our YouTube Channel). It is also considered part of our Rheumy RoundsⓇ special series, where patients and rheumatology professionals unite - as equals - to discuss problems that, if solved, could improve outcomes in the rheumatology community.   If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you'll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow. JOIN TODAY!   AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).   Episode 64: The office visit - viewpoints from both the patients AND the rheumies! 00:53 - Katie welcomes listeners. 01:20 - Katie is joined today by recurring co-hosts Tiffany, Deb, and Patrice and rheumatologists Dr Al Kim and Dr Jeff Sparks. 01:55 - Today's episode will focus on the challenges of communication between patients and rheumatologists during office visits. 04:28 - What does a doctor plan for in a 10-20 minute visit? 04:34 - Doctors are focusing on maximizing therapeutic use of medications, especially minimizing steroid usage. 05:07 - They then focus on health maintenance issues like cardiovascular disease management. 05:36 - Emotional aspects of living with rheumatic disease or quality of life issues for patients are highly unpredictable and difficult to anticipate, and physicians have limited tools for addressing these concerns. 08:22 - Rheumatologists feel constantly pressed for time because 20 minute appointment slots are never enough time, especially for complex cases, and often the visits don't even receive the full 20 minutes due to outside logistical complications. 09:11 - The top priorities for Jeff are to get a full interval history of how the patient has been doing since the last visit and to make sure the current medication regimen is correct for the patient. 10:33 - Jeff hopes to get to health maintenance issues before the time expires. 11:53 - How do rheumatologists fit conversations about holistic approaches to disease management in that 20 minute appointment model? 12:07 - It's almost impossible to do during the standard appointment, so some doctors are trying to connect patients with other resources like dietitians, physical therapists, or even yoga instructors instead of trying to provide those services themselves. 13:17 - An ideal would be to have a multi-disciplinary center where patients see all the specialists in the same day to receive holistic care, but that doesn't really happen - at least in the American healthcare system. 14:58 - What is the ideal level of preparation for a patient, from the perspective of a rheumatologist? 15:09 - Patients who have 3-10 questions planned in advance, especially when those questions are related to medication regimens or therapeutic plans. 17:24 - Do you have issues with patient compliance with prescribed medications? 18:11 - Patient adherence is definitely an issue, and rheumatologists would rather know if you are not taking your medication and why so they can get you on a medication that will work for you. 19:48 - Rheumatologists are trying to use the term non-concordance in place of compliance or adherence because neither of those terms are consistent with shared decision making principles. 20:02 - Eroded communication between patient and provider is responsible for non-concordance because it leads patients to make their own decisions about certain medications. 24:35 - What are the biggest changes you've seen in rheumatology visits over the course of your career? 24:53 - The changing requirements of documentation for medical records has created an incredible amount of bureaucracy that is not helpful to caring for patients and strips away the humanity of providing medical care. 25:58 - To watch the entirety of this conversation, check out our EULAR debrief video #6 on our YouTube Channel. 26:48 - You can also find any of our previous podcast episodes at aiarthritis.org/talkshow. 26:57 - Please consider donating at aiarthritis.org because we need your support to keep this show and all of our initiatives moving forward. Be sure to check out our top-rated show on Feedspot!  

This week join your patient co-hosts, Tiffany Westrich-Robertson, CEO of the International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis), and recurring 2021 patient co-host Deb Constien as they welcome two special guests to the table for a new episode of our Special Series on COVID-19. They are joined today by two practicing adult rheumatologists: Dr. Al Kim ("Al") of the Washington University School of Medicine and Dr. Jeff Sparks ("Jeff") of the Harvard School of Medicine *.  This debrief they focus on sessions that involved communication and office visit needs (patient side and rheumy side), as well as shared-decision making and the evolution of visits to include discussions on comorbidities (and multi-morbidities).  The rheumies also update us on COVID-19 vaccinations and new research.  Jeff received an abstract award at the conference for his research on COVID-19 disease outcomes for patients taking immunosuppressant medications and Al is doing research, led by Washington University, tracking vaccine response in autoimmune patients.  Shared decision making about therapeutic plans, including vaccination, is the other hot topic for the day! The rheumies and our co-hosts dish about the topics on patients' minds including antibodies, boosters, and next steps. And Tiffany gives a special thank you to Janssen Pharmaceuticals for investing in the organizations new initiative to prepare patients to engage in shared decision making about COVID-19 and vaccines.    This special episode was recorded during a EULAR 2021 debrief. You can watch the entire, unedited video recording (that also includes Katie and Patrice) HERE.  While there, watch all of our EULAR 2021 content on our YouTube Channel. *Actually, at minute marker 20 in the full video, Al and Jeff zoom-bombed our patient-led debrief, the first time non-patient stakeholders were invited to the table for this series. But it was about rheumy communication, so why not?!    Now, if you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you'll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. JOIN TODAY!   AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org) to have your seat at the table.   Episode 63: COVID-19, Vaccinations, Shared-Decision Making, & Rheumy Communications 01:37 - Tiffany welcomes listeners. 03:12 - Tiffany is joined today by recurring co-host Deb and rheumatologists Dr Al Kim and Dr Jeff Sparks. 05:16 - Today's episode will focus on COVID-19 vaccinations and new research on COVID-19, as well as the launch of a new AiArthritis initiative to promote shared decision making regarding COVID-19 vaccinations. 07:47 - Thank you to Johnson & Johnson for funding our work on this important initiative.  09:01 - Jeff explains his award-winning research abstract presented at EULAR 2021. 10:33 - Jeff's research found that COVID-19 patients who were taking Rituximab and JAK inhibitors prior to diagnosis had more severe disease courses compared to patients who were not treated with these drugs or were treated with different DMARD or Biologics. 10:58 - This is especially interesting because some trials have shown that JAK inhibitors can be effective in treating COVID-19 in patients who were not taking immunosuppressant medications prior to diagnosis. 13:19 - COVID-19 is a unique disease in that it creates a second stage inflammatory state where immunosuppressants can be helpful in preventing death and facilitating recovery. 13:48 - Research from Yale shows that a patient's ability to produce antibodies effectively in the early stage of the disease is crucial to preventing the more serious form of the disease, so patients taking immunosuppressants have an increased risk of developing severe COVID even though these drugs are helpful in treating the disease in the second stage. 15:32 - AiArthritis (in conjunction with EULAR PARE) just launched the Pathway of Patient Engagement in Rheumatology Research, which features Jeff's research abstract. 16:32 - What should patients be preparing for before their rheumatology appointments as new information about COVID-19 and vaccines continues to develop? 17:00 - Al still thinks that testing patients for antibodies doesn't make sense because antibody status is not actionable information from the rheumatologist's perspective. 17:47 - Prophylactic monoclonal antibodies are substantially restricted because they have only been approved under an Emergency Use Authorization by the FDA, so your rheumatologist cannot just prescribe them for you because your vaccine did not yield COVID-19 antibodies. 18:05 - Booster shots for COVID-19 have also not been approved by the FDA yet, so some patients are lying about their vaccination status to get a second set of shots.  Please note that neither AiArthritis nor the rheumatologists appearing in this episode recommend this course of action. 22:21 - Rituximab is generally considered to be a very safe drug, but it elevates risk for patients with COVID-19. 23:06 - This raises questions for doctors about whether they should continue prescribing it in light of the risk that patients may be facing from COVID-19. 23:15 - It will be very important for patients to engage in shared decision making with regard to drugs that elevate COVID-19 risks. 24:11 - Special thanks to Janssen Pharmaceuticals for their support in funding our work on promoting shared decision and helping patients with regard to COVID-19 vaccination decisions. 26:36 - To watch the entirety of this conversation, check out our EULAR debrief video #6 on our YouTube Channel. 26:55 - If you are interested in going to conferences with us, find out how you could attend a conference with us at aiarthritis.org/conferences. 27:11 - You can also find any of our previous podcast episodes at aiarthritis.org/talkshow. 27:17 - Please consider donating at aiarthritis.org because we need your support to keep this show and all of our initiatives moving forward. 27:54 - Tiffany thanks listeners for their support.   Links discussed in this debrief: 2021 EULAR recommendations for the implementation of self-management strategies in patients with inflammatory arthritis - https://ard.bmj.com/content/early/2021/06/13/annrheumdis-2021-220249 Exploring intentional medication non-adherence in patients with systemic lupus erythematosus: the role of physician-patient interactions - https://pubmed.ncbi.nlm.nih.gov/33604502/ Associations of baseline use of biologic or targeted synthetic DMARDs with COVID-19 severity in rheumatoid arthritis: Results from the COVID-19 Global Rheumatology Alliance physician registry - https://pubmed.ncbi.nlm.nih.gov/34049860/ Glucocorticoids and B Cell Depleting Agents Substantially Impair Immunogenicity of mRNA Vaccines to SARS-CoV-2 - https://www.medrxiv.org/content/10.1101/2021.04.05.21254656v2.full.pdf Learn more about the Pathway of Patient Engagement in Rheumatology Research: www.rheumactioncouncil.org/pathway   Be sure to check out our top-rated show on Feedspot!  

This week join your patient co-hosts Tiffany Westrich-Robertson, Deb Constein, Patrice Johnson, Katie Simons, and Leslie Rott Welsbacher as they brief our AiArthritis patient community on the first day of EULAR 2021. Tiffany, Deb, and Patrice are recurring co-hosts on the show and attended EULAR 2020. Those episodes are available on our YouTube channel if you missed them last year. They are joined this year by Katie, the Senior Programs & Communications Manager for AiArthritis and a patient with RA and Leslie, a patient advocate and author of the blog Getting Closer To Myself - where she chronicles life with RA and Lupus. EULAR has many new exciting things in store for us this year, the first of which is a name change! Formerly known as the European League Against Rheumatism, the organization is now called the European Alliance of Associations for Rheumatology and is in the midst of hosting their annual conference online for the second consecutive year due to the COVID-19 pandemic. Patients are one of three pillars of EULAR (researchers and medical professionals make up the other two) and are encouraged to attend and participate in the annual conference. This is particularly accessible in the virtual format, so AiArthritis has taken an entire team of patient advocates to attend sessions and report back to our listeners on all the hottest topics in rheumatology research presented at the scientific conference. So we invite you to get comfy on your couch with a glass of your preferred beverage, pretend we are all together in Paris (intended location of the conference before it was moved to the virtual platform), and enjoy our debrief of this first round of sessions. Then head over to our YouTube Channel or online patient platform to learn even more! Now, if you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join Tiffany, Deb, and all the other recurring Voices 360 co-hosts to continue this conversation inside our coordinating AiArthritis Voices online community - where patients unite with others around the world to talk, learn, and connect.    JOIN TODAY!   AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org) to have your seat at the table.     Episode 62: EULAR 2021   00:52 - Tiffany welcomes listeners. 01:41 - Tiffany is joined by recurring co-hosts Deb and Patrice, as well as fellow patient co-hosts Katie and Leslie. 04:04 - Today's episode is brought to you from the European Alliance of Associations for  Rheumatology Virtual Conference 2021 (formerly the European League Against Rheumatism). 07:29 - Collaboration is a major theme of the conference this year. 08:06 - Patients are 1 of 3 pillars in the organizational structure of EULAR (along with researchers and health professionals), so they are welcomed and encouraged to participate in the annual conference. 09:11 - Inflammation is another major theme of the conference, even including a session on the impact of inflammation on dementia. 13:17 - One session Tiffany and Patrice attended was titled “HELP!  What do I need to cope with my rheumatic disease?” 14:32 - Patrice gives a brief summary of the session. 18:13 - One of the key themes of the session was the interaction between genetics and environmental triggers and how educating people about potential triggers may help prevent onset of disease in people who are genetically predisposed to develop rheumatic disease. 24:09 - Comorbidity is when the primary disease triggered some other condition, whereas multi-morbidity is when some factor to do with the patient spontaneously triggers multiple disease conditions. 27:33 - The second session the co-hosts attended was on exercise. 28:50 - Tiffany asks the other co-hosts: do you have any fears about exercising? 29:00 - Patrice exercises every day and says movement makes her feel better. 30:20 - In Italy 90% of people living with rheumatic diseases are inactive. In the US around 70% of patients are inactive. In Finland, around 40% of patients were inactive (which was the most active country in the study). 30:49 - Researchers want to know why more patients don't exercise when the studies show that exercise helps patients feel better. 31:35 - Researchers put a group of 136 rheumatic patients on a high-intensity weight-bearing exercises for 2 years and did not have any more damage or disease progression than the control group. 34:22 - Tiffany talks about the importance of knowing your limits as related to your specific diagnosis. Keep in mind that all exercise advice is generalized and you have to figure out the routine that works for you. 36:15 - Katie talks about working with physical therapists who understand your condition to look for expert guidance on what works for you. 38:00 - The next session the co-hosts attended was on Remission and Lupus: Is remission achievable with today's drugs? 38:31 - In recent studies, at least 50% of patients were able to achieve at least one remission state. 38:38 - For people who have had Lupus a long time, long-term remission is very rare. 39:15 - Clinical remission without treatment is extremely rare and probably not a realistic goal for patients, but clinical remission with treatment is definitely possible. 42:45 - Patrice asks Leslie: How did you feel about a presenter describing Lupus patients' quality of life as poor? 43:44 - Leslie discusses people's perception of Lupus, quality of life issues, and health equity. 52:28 - Tiffany attended a session on multidisciplinary care. 52:48 - Tiffany asks her co-hosts:  how many different doctors do you have? 53:00 - Only Deb and Tiffany have teams that work together (both within University systems). Everyone else has doctors that do not talk to each other. 54:10 - Tiffany also attended a session about RA that is difficult to treat , where researchers defined “difficult to treat” as failing 2 or more treatments that use different mechanisms of action. 55:50 - AiArthritis is partnered with OMERACT and EULAR on a study about synovial tissue studies. 56:46 - Aurelie presented at a session based on this research where she recommended 14 points to EULAR about changing physician practices with regard to patient education and biopsy collection. 1:02:00 - This episode will be broken down into smaller video segments and posted to our YouTube channel for anyone interested in watching specific segments. 1:02:44 - All of the videos from EULAR 2020 are also available on our YouTube channel as well. 1:02:55 - You can also find any of our previous podcast episodes at aiarthritis.org/talkshow. 1:03:10 - Connect with us on social media @ IFAiArthritis on all platforms. 1:03:30 - Email Katie at katie@aiarthritis.org if you are interested in attending future conferences (please put Go To Conferences in the subject line). 1:03:45 - Please consider donating at aiarthritis.org because we need your support to keep this show and all of our initiatives moving forward. 1:04:21 - Follow Leslie's blog @ GettingCloserToMyself.blogspot.com. 1:05:00 - Tiffany thanks listeners for joining all of our co-hosts today.       Be sure to check out our top-rated show on Feedspot!

This week join your patient co-hosts Tiffany Westrich-Robertson and Deb Constein as they discuss AiArthritis’ 2021 Annual Fundraising Effort:  The Charity Talk. Since many of the members of the AiArthritis community are unable to walk long distances, AiArthritis decided to host a Charity Talk in lieu of the traditional Charity Walk. The purpose is to raise awareness, educate the public about our diseases, and raise money to support the ongoing work our organization does to serve the 450 million people worldwide living with AiArthritis diseases. Would you like to get involved? You can download free materials to host your own Charity Talk to educate your friends and family about the nature of your disease. Tune in to this special mini episode to find out all the details and get started. We need your help to promote early detection and treatment, help families and friends be supportive of people living with AiArthritis diseases, and help patients grapple with their changing roles in life after diagnosis. All of the money raised from these events will go to support the mission of AiArthritis to elevate the patient voice in global conversations with all stakeholders in education, advocacy, and research in the field of autoimmune and autoinflammatory arthritis. Now, if you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join Tiffany, Deb, and all the other recurring Voices 360 co-hosts to continue this conversation inside our coordinating AiArthritis Voices online community - where patients unite with others around the world to talk, learn, and connect.    JOIN TODAY!   AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/podcast. Find us on Twitter, Instagram, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org) to have your seat at the table.     Episode 61: Charity Talk   00:52 - Tiffany welcomes listeners. 01:13 - Tiffany is joined by fellow patient co-host, Deb 02:15 - On May 1st, AiArthritis hosted a virtual Charity Talk (an alternative to a traditional Charity Walk). 05:28 - A primary focus of the Charity Talks is to create educational materials to communicate to the public that AiArthritis diseases are systemic, full body diseases. They are not “just” arthritis. 06:23 - All of the materials from the event are available for anyone to use to organize their own event to educate friends and family. 09:13 - Lack of understanding or mistaken assumptions about physical abilities can create conflicts between AiArthritis patients and their families or friends. 10:18 - Delayed diagnosis leads to delayed treatment and irreversible damage so educating the public can also help people with symptoms get a diagnosis sooner. 14:03 - The Charity Talk materials also cover the idea of “Who Am I Now?” and how the roles of an AiArthritis patient may have to change after diagnosis 16:21 - Visit aiarthritis.org/charitytalk to download all of the free materials to host your own Charity Talk, especially in the month of May in support of World Autoimmune and Autoinflammatory Arthritis Day (May 20th) 17:00 - Donations are also accepted on the same webpage to support all the work AiArthritis does to help patients living with AiArthritis Diseases worldwide. 17:44 - Tiffany thanks listeners for their continued support.   Be sure to check out our top-rated show on Feedspot!

This week, join your patient co-hosts Kelly Conway and Rick Phillips and special guest Heather Kenjorski for a frank discussion about mental health, AiArthritis patients, and the COVID-19 pandemic. Kelly is a co-founder of AiArthritis and the author of the blog As My Joints Turn: My Autoimmune Soap Opera, as well as a recurring co-host for AiArthritis Voices 360. Rick is the founder of RA Diabetes, a website devoted to people who have both Rheumatoid Arthritis and Type I Diabetes and a returning AiArthritis Voices 360 co-host. You can check out Rick’s recent appearance in Episode 48: Support, which also tackled issues relating to mental and emotional wellness. Heather is a licensed social worker who has experience treating AiArthritis and other chronically ill patients dealing with depression and anxiety.  On February 21, 2021 Kelly wrote a very poignant blog post titled “Not A Me Too Moment” where she spoke very openly about her battle with depression resulting from chronic illness and how the tragedies she has experienced during the pandemic have led to her depression being out of control at the current time. In response to this blog post, Rick shared that he too has been in treatment for many years for depression. They decided to get together and bring in a professional to discuss this topic in more detail for the benefit of all the people listening to the show who may also be experiencing depression, especially those who are not currently seeking help from the medical community for their struggles. We invite you to pull up a chair and listen in as Kelly and Rick share deeply personal information about their lives that many people avoid discussing due to the stigma attached to mental health. Together with Heather, they will discuss the bravery inherent in asking for help when you need it, how to go about getting help if you think you might benefit from having someone to talk to about your issues, how to recognize when you or someone else may be struggling, and what resources exist for people who are having difficulty accessing mental health treatment. This is an important episode, and you don’t want to miss it. Now, if you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join Kelly, Rick, and all the other recurring Voices 360 co-hosts to continue this conversation inside our coordinating AiArthritis Voices online community - where patients unite with others around the world to talk, learn, and connect.    JOIN TODAY!   AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/podcast. Find us on Twitter, Instagram, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org) to have your seat at the table.     Episode 60: Depression   00:52 - Kelly welcomes listeners. 01:30 - Kelly is joined by fellow patient co-host, Rick Phillips and licensed social worker, Heather Kenjorski.  3:03 - Today’s topic is depression among people living with AiArthritis diseases, especially during the COVID-19 pandemic. 04:45 - Today’s episode was inspired by Kelly’s blog post titled “Not a Me Too Moment” on her blog As My Joints Turn: My Autoimmune Soap Opera. 07:10 - Rick wants people to know that medication and talk therapy can help, and there is no need to suffer in silence. 07:15 - Heather, have you seen an increase in patients experiencing depression since the onset of the pandemic? 07:40 - Many of the coping mechanisms suggested for people struggling with depression and anxiety are not possible during the pandemic which has led to an increase in isolation and feelings of sadness and hopelessness. 08:18 - Staying home and quarantining exacerbated people’s existing struggles with depression and anxiety. 10:40 - One study presented at ACR 2020 found that some Lupus patients felt better emotionally at the start of the pandemic because the entire community was experiencing life the way they usually do (avoiding germs, curbside pickup, etc). 12:30 - Some AiArthritis patients experienced extreme emotional stress from being forced to go to work during the pandemic when they felt it was safer to stay home. 16:04 - Heather what are some of the signs and symptoms of depression?  16:31 - People are very skilled at putting on a brave face, so you can’t rely on their outward appearance. 16:52 - Signs of depression may be a loss of interest in things someone used to enjoy like activities, eating, or communicating with others. 17:18 - Sudden loss of appetite or eating much more than normal can both be signs of depression. 17:39 - Fatigue or having no desire to engage with people can be a sign. 17:45 - Depressed people may not take care of themselves like getting dressed, showering, or brushing their teeth. 18:03 - If you can’t look forward to things or feel hopeless, that could be a sign of depression. 18:44 - Anger can also be a symptom of depression. 19:46 - Depression is not a sign of weakness, and life gets better after treatment. 22:30 - Some therapy practices are full right now because so many people are seeking mental health assistance. 23:11 - Heather, do you find that people have a difficult time admitting that they need help? 23:40 - There is definitely still a stigma attached to receiving therapy, and it’s a shame because it keeps people from getting the help that they need. 25:02 - It is courageous to get therapy and address your issues. 25:10 - To stay in a miserable state of mind is not strength. 29:36 - Caretakers often experience serious depression and have limited avenues for emotional support outside of therapy. 30:29 - Heather do you have any other tools (besides medicine and talk therapy) that you find useful in helping people battling depression? 31:06 - Self-care is key for everyone, and it’s something people aren’t necessarily very good at doing. 32:11 - Journaling is a great way to get in touch with your own feelings. 33:02 - Meditation, deep-breathing exercises, and physical movement are all important aspects of self-care. 37:49 - The more people try to avoid their own negative thoughts, the more powerful those thoughts become so learning to meditate and be present with your own thoughts - even if they aren’t comfortable thoughts - can be very important to mental wellness. 39:03 - It may be helpful to remember that depression is not a permanent state; it will end. 40:14 - Chronic illness isn’t the end of the world, but it is a different way of living in the world. 42:30 - How can we help our community identify when they may need help or find help for people who cannot afford mental health assistance? 43:07 - Many communities have assistance for people who cannot afford private therapy, but you need to reach out to your local mental health advocates, mental health society, family services, local hospitals, or even private doctors and ask what is available in your area. 45:08 - Virtual appointments are now available because of the pandemic which has opened many doors for people who lacked transportation to appointments. 49:51 - Like us or message us on social media @IFAiArthritis on all platforms to stay informed and involved or email us at podcast@aiarthritis.org 50:33 - Find all our episodes on our website at aiarthrits.org/talkshow 51:08 - You can reach Rick at info@RADiabetes.com or follow Rick’s blogs at ankylosingspondylitis.net and rheumatoidarthritis.net 51:49 - Please be part of the continued conversation at aiarthrisvoices.org. 52:03 - Kelly thanks her co-hosts and the listeners. Be sure to check out our top-rated show on Feedspot!