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Air Date - 18 May 2024In recognition of Fibromyalgia Awareness Month, the latest episode of the Autoimmune Hour features host Sharon Sayler and guest Kristal Kent, an army veteran and fibromyalgia advocate. Kristal shares her self-advocacy journey and emphasizes the importance of raising awareness for invisible illnesses. She discusses how her personal experience with fibromyalgia led her to become an advocate for legislative and social media attention. Kristal also highlights• the need for more research and better representation of invisible illnesses.• the importance of self-education, tracking symptoms, and advocating for one's health,• the necessity for inclusivity in advocacy, representing all affected demographics, including men,Lastly, Kristal inspires others to find creative ways to support their chosen cause and much more…More About Our Guest: Kristal Kent is an Army Veteran living with Fibromyalgia. Through her journey, Kristal identified the lack of support, healthcare options, and education for those living with Fibromyalgia, especially Veterans. To address the gap in healthcare and community support, Kristal created the initiatives “The Fibromyalgia Pain Chronicles” and “Veteran Voices For Fibromyalgia” to address the inequities in healthcare along with engaging in VA Policy Advocacy, Legislative Advocacy, and Systems Advocacy to emote positive change for those living with Fibromyalgia.Kristal previously served as a Board of Trustee for the Fibromyalgia Care Society of America and the WEGO Health Patient Advisory Board and participated on the Cleveland Clinic's Patient Panel. Kristal is also a member of the Society For Participatory Medicine, WEGO Health's Patient Leader Network, a Co-op member of Savvy Cooperative, and a member of the American Legion. You can find more at www.veteranvoicesforfibromyalgia.com and great videos with Kristal at www.youtube.com/@thefibromyalgiapainchronicles#KristalKent #Fibromyalgia #SharonSayler #UnderstandingAutoimmune #AutoimmuneHour #Wellness #Autoimmune #Health #SelfHelp #Lifestyle #Interviews* Your host is not a doctor nor a medical professional. Your host, guests, and all medical professionals appearing on the show share opinions only during our presentation. The information presented in this interview cannot substitute for the advice of your physician or other trained medical, healthcare, legal, or other professionals. Host(s) and guest(s) are not diagnosing specific conditions during the show. This show is not intended to diagnose, prevent, or treat autoimmune diseases or other conditions or illnesses. The information provided on UnderstandingAutoimmune.com, Life Interrupted Radio.com, and The Autoimmune Hour is for educational purposes only and opinion only. It is not a substitute for your own medical, legal, or other professional advice and care.©2024 Sharon Sayler and UnderstandingAutoimmune.comVisit the Autoimmune Hour show page https://omtimes.com/iom/shows/autoimmune-hour/Connect with Sharon Sayler at http://lifeinterruptedradio.com/Subscribe to our Newsletter https://omtimes.com/subscribe-omtimes-magazine/Connect with OMTimes on Facebook https://www.facebook.com/Omtimes.Magazine/ and OMTimes Radio https://www.facebook.com/ConsciousRadiowebtv.OMTimes/Twitter: https://twitter.com/OmTimes/Instagram: https://www.instagram.com/omtimes/Linkedin: https://www.linkedin.com/company/2798417/Pinterest: https://www.pinterest.com/omtimes/
In recognition of Fibromyalgia Awareness Month, the latest episode of the Autoimmune Hour features host Sharon Sayler and guest Kristal Kent, an army veteran and fibromyalgia advocate. Kristal shares her self-advocacy journey and emphasizes the importance of raising awareness for invisible illnesses. She discusses how her personal experience with fibromyalgia led her to become an advocate for legislative and social media attention. Kristal also highlights • the need for more research and better representation of invisible illnesses. • the importance of self-education, tracking symptoms, and advocating for one's health,• the necessity for inclusivity in advocacy, representing all affected demographics, including men,Lastly, Kristal inspires others to find creative ways to support their chosen cause and much more...More About Our Guest: Kristal Kent is an Army Veteran living with Fibromyalgia. Through her journey, Kristal identified the lack of support, healthcare options, and education for those living with Fibromyalgia, especially Veterans. To address the gap in healthcare and community support, Kristal created the initiatives “The Fibromyalgia Pain Chronicles” and “Veteran Voices For Fibromyalgia” to address the inequities in healthcare along with engaging in VA Policy Advocacy, Legislative Advocacy, and Systems Advocacy to emote positive change for those living with Fibromyalgia.Kristal previously served as a Board of Trustee for the Fibromyalgia Care Society of America and the WEGO Health Patient Advisory Board and participated on the Cleveland Clinic's Patient Panel. Kristal is also a member of the Society For Participatory Medicine, WEGO Health's Patient Leader Network, a Co-op member of Savvy Cooperative, and a member of the American Legion. You can find more at www.veteranvoicesforfibromyalgia.com and great videos with Kristal at www.youtube.com/@thefibromyalgiapainchroniclesShare this link with your family and friends: www.understandingautoimmune.com/Advocate_2024* Your host is not a doctor nor a medical professional. Your host, guests, and all medical professionals appearing on the show share opinions only during our presentation. The information presented in this interview cannot substitute for the advice of your physician or other trained medical, healthcare, legal, or other professionals. Host(s) and guest(s) are not diagnosing specific conditions during the show. This show is not intended to diagnose, prevent, or treat autoimmune diseases or other conditions or illnesses. The information provided on UnderstandingAutoimmune.com, Life Interrupted Radio.com, and The Autoimmune Hour is for educational purposes only and opinion only. It is not a substitute for your own medical, legal, or other professional advice and care.©2024 Sharon Sayler and UnderstandingAutoimmune.comIf you've listened to the show, you know it's what my friends call my irrational passion... Please help us continue to offer help and hope for those with autoimmune and long-term health challenges by supporting The Autoimmune Hour podcast: https://www.spreaker.com/podcast/the-autoimmune-hour--2935987/support.
The Caregiver's Journal hosted by Lance A. Slatton and Denise M. Brown. The Caregiver's Journal is the show where we are sharing the caregiving experiences, stories, and wisdom of family caregivers. Chapter 2 - "The Path to Diagnosis": In this journal entry, we welcomed Jesus Loreto, Sharon Hall, and Effie Parks who shared their stories and experiences on "The Path to Diagnosis". Jesus Loreto: Jesus is a Certified Caregiving Facilitator and member of the Patient Advocacy Council Guthy Jackson Charitable Foundation Caregiver for his beautiful wife Maria Elena who was diagnosed with Neuromyelitis Optica NMOSD (NMO) for 16 years. Jesus had been running a caregiver's support group for almost a decade and found it very rewarding to help others to navigate their diagnosis and manage their disease day to day. Jesus believes that by telling your story you can save lives, you make people realize they are not alone. They have readjusted to their new normal, and love life. They live with NMO but NMO is not their life. Sharon Hall: During Sharon's 18 years of caregiving, she has navigated the medical community, the social service community, and the support community. Her husband was diagnosed with frontotemporal degeneration, so she has added experience in young onset dementia.She was a care partner speaker at the Research Summit on Dementia Care and Services at the NIH in 2017. She has also presented at the 2017, 2018 and 2019 National Caregiver Conferences. Sharon has been a speaker in many webinars on dementia. She facilitates a local support group and an online chat for care partners. She also has a podcast with a dementia expert to give families much needed information. Sharon also contributed to the “Fighting Alzheimer's” insert in USA Today. Sharon is active in social media within the dementia community. Effie Parks: Effie Parks, originally from beautiful Montana, has become a guiding light in the rare disease community following her son Ford's diagnosis with CTNNB1 syndrome. Settling in Washington, she transformed her family's journey into a crusade for advocacy, support, and empowerment for families navigating similar challenges. As the host of the "Once Upon a Gene" podcast, Effie has been recognized for several awards including WEGO Health and Podcast Magazine for her impactful storytelling and resource-sharing in the realm of rare genetic disorders. Effie extends her advocacy through speaking engagements at medical and patient advocacy conferences, sharing her experiences and insights from her work to bridge the gap between all rare disease stakeholders. Her skill in community engagement, developed through her advocacy, empowers her efforts in building a supportive network and raising awareness. With a mission to leave the world better than she found it, Effie is dedicated to fostering a more informed and empathetic environment for those impacted by rare diseases. Her work embodies resilience and compassion, inspiring and uniting the rare disease community. Effie's journey is not just about sharing stories, it's about driving change and creating a lasting impact in the world of rare genetic conditions. Visit The Caregiver's Journal Official Website: https://thecaregiversjournalpodcast.com/ Connect with Lance A. Slatton: Official Website: https://www.lanceaslatton.com Official Website: https://www.allhomecarematters.com Connect with Denise M. Brown: Official Website: https://join.caringourway.com/
Once Upon A Gene is a Podcast for families living with rare diseases. There are personal stories and resources shared to help connect us with our community. Although I only linked Apple podcast below, Once Upon A Gene is available on any player of your choice and has a YouTube channel. Effie Parks, originally from beautiful Montana, has become a guiding light in the rare disease community following her son Ford's diagnosis with CTNNB1 syndrome. Settling in Washington, she transformed her family's journey into a crusade for advocacy, support, and empowerment for families navigating similar challenges. As the host of the "Once Upon a Gene" podcast, Effie has been recognized for several awards including WEGO Health and Podcast Magazine for her impactful storytelling and resource-sharing in the realm of rare genetic disorders. Effie extends her advocacy through speaking engagements at medical and patient advocacy conferences, sharing her experiences and insights from her work to bridge the gap between all rare disease stakeholders. Her skill in community engagement, developed through her advocacy, empowers her efforts in building a supportive network and raising awareness. With a mission to leave the world better than she found it, Effie is dedicated to fostering a more informed and empathetic environment for those impacted by rare diseases. Her work embodies resilience and compassion, inspiring and uniting the rare disease community. Effie's journey is not just about sharing stories, it's about driving change and creating a lasting impact in the world of rare genetic conditions. Two Disabled Dudes: https://twodisableddudes.com/ "Chasing My Cure: A Doctor's Race to Turn Hope Into Action; A Memoir" - Dr. David Fajgenbaum: https://amzn.to/3OpBzLg "The Ataxian" documentary (Amazon Prime): https://amzn.to/4bg53oS Connect to Learn More: Website: https://effieparks.com/ Email: hello@onceuponagene.com FB: @OnceUponAGene IG: @onceuponagene.podcast Apple Podcast: https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347 Episode Transcript: https://docs.google.com/document/d/1Q6gNJc9HGU7HRMdEA8I2R3G-fHJI8qdT/edit?usp=sharing&ouid=117716030289987185197&rtpof=true&sd=true As an Amazon Associate, I earn commissions from qualifying purchases. For more information about True North Disability Planning you can find us here: Web: https://truenorthdisabilityplanning.com/ Waypoints - https://waypoints.substack.com/ Facebook: @TrueNorthDisabilityPlanning X (Twitter): @NeedsNavigator --- Send in a voice message: https://podcasters.spotify.com/pod/show/abcs-disability-planning/message Support this podcast: https://podcasters.spotify.com/pod/show/abcs-disability-planning/support
If you need a boost of inspiration, a bit of laughter, and a lot of intention, listen to our special guest on the Newborn Screening SPOTlight podcast Effie Parks, who transformed her experiences raising a son with a rare disease to helping others by sharing their stories on her podcast, Once Upon a Gene. The best way to describe Effie may be as the rare disease parent's best friend… and greatest resource! She was born in Montana, where she was raised with her 12 siblings. After moving to Washington and marrying her husband, they were blessed with the birth of their son, Ford Canon Parks. When she learned that Ford had been born with an extremely rare genetic condition – CTNNB1 syndrome – she immersed herself into the world of advocacy. Now, she is the host of her own podcast, Once Upon a Gene, where she speaks to others about their journey through life with rare disease. Since the launch of the podcast, Once Upon A Gene was awarded “Best In Show Podcast” by WEGO Health. Podcast Magazine recognized Effie as one of the 40 Under 40 Podcasters and she has been nominated for two Champion of Hope awards from Global Genes. Her mission is to learn, lift voices of the community, connect people to resources and to leave this world better than she found it for others in the rare disease world. Interview Questions: You are the host of podcast of Once Upon a Gene, where you speak to others about their journey through life with rare disease. Your mission is to learn, lift voices of the community, connect people to resources and to leave this world better than you found it for others in the rare disease world. What inspired you to start your podcast? Your baby was diagnosed with a rare disease called CTNNB1 syndrome. Can you tell us what led to the diagnosis and what happened next? Researchers discovered the genetic testing for CTNNB1 syndrome. While there is no single treatment for CTNNB1 Syndrome, each of the symptoms associated with the syndrome may be treated. Also, CTNNB1 gene is a good candidate for genetic replacement therapy. This exciting to hear the new development and research in treatments. Could you share your process in caregiving to your child with CTNNB1 syndrome? Any advice for new moms? Newborn screening identifies metabolic and genetic disorders at birth. Before your child was diagnosed with CTNNBI, were you aware of newborn screening? What do you think prospective parents should know about newborn screening? You are the host of Once Upon A Gene podcast, can you tell us what inspired to start the podcast? On your Once Upon a Gene blog, you shared that the movie “Back to Future” and especially the main cast member, Michael J. Fox have inspired you. Can you elaborate in what ways to our listeners? What has been going on in your life recently that you expected and didn't expect? As you know NBSTRN creates tools and resources to help stakeholders to advance newborn screening research. How could NBSTRN and other organizations such as the Rare Diseases Clinical Research Networks supported by the National Center for Advancing Translational Sciences (NCATS) help you and your community to advance rare disease awareness? Where can people go to learn more about you? What can people expect from you next? What is one final thought that you want to leave our listeners with? What does newborn screening research mean to you?
Do you suffer from the impact of migraines? Can incorporating yoga into your daily routine alleviate your migraine symptoms?MEET Adriane DellorcoAdriane Dellorco (RYT200) is one of the world's leading experts on yoga for migraine. She is the founder of Yoga for Migraine, an online community that offers transformational yoga and coaching programs to people living with migraine and headache disorders.She is a lifelong dancer and yoga practitioner who has been living with migraines since 2007. Adriane has been featured in the 2021 Migraine World Summit, Migraine.com, the National Headache Foundations For Head's Sake Podcast, HealthCentral, and Healthline.Her certifications in Pain Reprocessing Therapy and Pain Care Aware Yoga have given her cutting-edge skills to help clients with chronic migraine reduce their chronic pain symptoms and feel more empowered in their daily lives.In addition to offering migraine-friendly yoga practices in her online classes and group coaching programs, Adriane makes yoga accessible to the wider migraine community in collaboration with organizations like Miles for Migraine and RetreatMigraine. She is proud to advocate Congress every year in Headache on the Hill and to be a finalist in Wego Health's 2022 Social Health Awards in the Creative Contributor category.Adriane is a member of the Education Council for Headache Online, an Accessible Yoga Ambassador, and is pursuing her IAYT yoga therapist certification.As a mother of two and a former public school teacher, she brings her life experience living with migraine into her healing yoga practices.Adriane's mission is to help others decrease their own migraine pain and increase their quality of life with yoga.Find out more at Yoga Migraine and connect with Adriane on Facebook & InstagramIN THIS PODCAST:What are the negative impacts of migraines? 3:56Making lifestyle changes when dealing with migraines 9:01Overcoming fear when experiencing migraines 15:53What Are The Negative Impact Of Migraines?Understanding that migraines affect everyone differentlyTaking a holistic approach to dealing with migrainesThe importance of finding the right combination of care to deal with your specific needsSeeking community when dealing with migraine symptomsMaking Lifestyle Changes When Dealing With MigrainesWhat is SEEDS?Incorporating gentle yoga moves into your daily routine Learning to adjust the intensity of your daily movementFinding tools to calm our nervous systemOvercoming Fear When Experiencing MigrainesFinding your migraine triggersHow to integrate breathwork with gentle movementWhat is Restorative Yoga?How to be more proactive and ask yourself the right questions about your self-careConnect With MeInstagram @holisticcounselingpodcastFacebookJoin the private Facebook groupSign up for my free email course: www.holisticcounselingpodcast.comRate, review, and subscribe to...
This week, we're talking about intimacy as a couple during fertility treatment.In this episode on Fertility in Focus, Carolynn Dubé is joined by Miss. Conception Coach, Chiemi Rajamahendran, to talk about how intimacy can change during treatment, and what you can do to normalize those changes. Chiemi shares her tips for creating spaces for intimacy throughout the process of infertility treatment and feeling connected together as a couple. She provides insights on how couples can be intimate during grief, trauma, and fear. They also discuss how to become intimate again after facing these challenges.More About Chiemi:Chiemi aka Miss.Conception Coach is a published writer and Infertility Trauma Support Specialist. She lends her unique voice and expertise to help people better understand, validate and process their infertility trauma. She uses her platform to raise awareness about the emotions felt and the reality of the mental health issues people experience after treatments like IVF/IUI. She facilitates various peer-led support groups and raises awareness through global campaigns, which have been published in GMA, ABC, and Elephant Journal. She was named a Patient Leader by WEGO Health in 2019, and 2020. She served on the board of directors for The Bundle Of Joy Fund, a nonprofit organization granting monetary awards to couples who require IVF. Through her unique counseling style, she helps people understand, validate and process their infertility trauma and grief. She offers worldwide individual and couples teletherapy. Connect with Chiemi on Instagram and visit her website to learn more.Stay up to date with all things Fertility in Focus by following us on Instagram, Facebook, and LinkedIn. If you are interested in being a guest or sponsoring Fertility in Focus, apply here.
This week I sat down with Sumaira Ahmed. Sumaira is the founder and executive director of The Sumaira Foundation (TSF). Prior to her career in healthcare and hospital administration in Boston, Sumaira worked as an actor/model in Hindi-/Bengali-language media, primarily in southeast Asia. Sumaira is a classically-trained Kathak dancer and has performed around the world in venues including Madison Square Garden, the Dolby Theatre, Santiniketan, and the Rudolf Steiner Theatre. In the summer of 2014, Sumaira was diagnosed with sero-negative neuromyelitis optica spectrum disorder (NMOSD) after experiencing sudden and severe vision loss and weakness/numbness. Less than two months after her diagnosis, she founded TSF to raise global awareness of NMOSD and MOGAD, create communities of support, advocate on behalf of patients and their caregivers, and support clinical research. In 2015, Sumaira was crowned the Miss Bangladesh-USA advocating for equal opportunity education for Bangladeshi children in efforts to increase tolerance and strengthen the country's international presence, economy and infrastructure. In September 2021, Sumaira was honored with WEGO Health's “Best Kept Secret” Award recognizing her advocacy work in rare disease. In 2022, Sumaira was prominently featured in an Emmy-award winning series, "Medical Stories", in an episode about NMOSD. Join me in my conversation with her where she tells her story and how she continues to triumph among adversity. You can find out more about Sumaira and her foundation at www.sumairafoundation.org @thesumairafoundation (instagram) @thesumairafoundation (facebook) @thesumairafdn (twitter)
“It's like being a chameleon. You try to look neurotypical or you try to block out the ADHD tendency, so you can mask when you have any type of disorder. So autism, OCD, ODD. But you block it out so you appear neurotypical. And while you're doing that, it takes so much energy to do so because you're trying to put on that face, you're looking like you're focused.” - Brooke Schnittman, ADHD Coach Today's guest is Brooke Schnittman. Brooke is a trained expert in the field of ADHD and Executive Function Coaching. She is the owner and founder of Coaching With Brooke since 2018. Brooke has worked with individuals with ADHD since 2006 and has been named "Top 10 Healthcare Collaborator" by WEGO Health, and "Top 60 Remote ADHD Coaches" by SOAR. As an adult who was diagnosed with ADHD later in life, Brooke has personally experienced and overcome many of the struggles that her clients encounter daily. In todays episode we dig into: What is ADHD, how it can be hidden in women and its superpower How she became an ADHD coach What masking is How getting a diagnosis would help you understand you Emotional dysregulation And much more! Please enjoy! Want to learn how to live a SMARTER, HEALTHIER (and, let's be honest, more EXCITING) LIFE? with top tips just for you! Steal My 10 Hacks to Improve Your Life & Longevity Playbook with top tips just for you - www.longevity-and-lifestyle.com/10hacks For Podcast Show Notes & Transcript visit: https://longevity-and-lifestyle.com/podcast-101-brooke Follow Brooke on: Instagram Youtube Website Follow Claudia on: Instagram: https://www.instagram.com/longevityandlifestyle/?hl=en Facebook: https://www.facebook.com/longevityandlifestyle/ YouTube: https://www.youtube.com/channel/UCZF-s8jsUejc0TpVqnFE1lQ/featured LinkedIn: https://www.linkedin.com/in/claudia-von-boeselager/ Twitter: https://twitter.com/LongevityLifest Website: https://longevity-and-lifestyle.com/ Past guests on The Longevity & Lifestyle Podcast include Dr. David Perlmutter, Dr. Amy Killen, Sergey Young, Dr. Dale Bredesen, Dr. Kristen Willeumier, Dr. Louise Newson, Dr. Kien Vuu, Dr. Carolina Reis, Marie Diamond, Nikolina Lauc, John Gray, Morri Chowaiki, Leslie Kenny, Maziar Brumand, Fiona O'Donnell-McCarthy, Mohamed Massaquoi, Nick Potter, Dr. Pamela Kryskow, Dr. Julia Mirer, Dr. Julia Jones, Dr. Austin Perlmutter, Dr. Richard Johnson, Isabella Channing, Dina Burkitbayeva, Raewyn Guerrero, Mario Chamorro, Mariko Bangerter, Harris Khan, Juraj Kocar, Dr. Stephanie Manson Brown, Dr. Mohammed Enayat, Dr. Molly Maloof, Helen Reavey, Elena Letyagina, Dana Frost, Niall Breslin, Dr. Limor Goren, Larisa Petrini, Leighanne Champion, Mike Bennet, Dr. Louise Swartswalter, Dr. Joseph Antoun, Patrick McKeown, Brooke Schnittman and many more!
This week we are talking once again with Kristal Kent. If you recall, Kristal has joined us on previous interviews discussing Fibromyalgia and again discussing prepping for surgery as a chronically ill person. We never really gave Kristal the credit she deserves for being such a fantastic advocate for all Veterans and those with Fibro or other life-long medical conditions. Allow me to properly introduce this dynamic woman! Kristal Kent is a disabled Army Veteran living with Fibromyalgia and served with the 256th Combat Support Hospital (256th CSH). Kristal worked with the Personnel (HR) department, then after September 11th, 2001, Kristal was re-assigned to the Tactical Operations Center (TOC) of the 256th CSH. After being medically discharged due to injuries, Kristal stayed on with her unit, the 256th CSH, and volunteered for 2 ½ years as the Family Readiness Group Leader, re-invigorating the program to become a supportive extension of the unit for the soldiers and their families. During her time as the FRG Leader, Kristal upstarted a Food Pantry to assist the Unit's service members struggling with food sustenance, coordinated a resource list of federal, state, and local support and assistance resource programs for soldiers and families, along with hosted “Readiness” educational weekend to ensure soldiers and Military Families were prepared for deployment. Kristal's Volunteerism as FRG Leader was officially recognized with a Commendation from the U.S. Department of the Army. Kristal also worked in Social Services for over 20 years in a variety of roles, from Adult Advocacy Coordinator, Care Coordinator, Assertive Community Treatment Specialist, Benefits Coordinator and Supported Employment Services, assisting individuals with Intellectual Disabilities, Mental Health Conditions and Veterans alike. As a Veteran living with Fibromyalgia, Kristal identified the lack of supports, healthcare options and education for those living with Fibromyalgia, especially Veterans. To address the gap in healthcare and community supports, Kristal founded the initiatives, “The Fibromyalgia Pain Chronicles” and “Veteran Voices For Fibromyalgia,” to address the inequities in healthcare, Kristal engages in VA Policy Advocacy, Legislative Advocacy and Systems Advocacy to emote positive change for those living with Fibromyalgia. Kristal also provides support, educational resources, and advocates on behalf of those living with various Chronic Pain Conditions, Rare Diseases, PTSD and Traumatic Brain Injury (TBI). Kristal's Advocacy work on behalf of the Veteran and Fibromyalgia Communities has been recognized by several organizations such as WEGO Health in which she received the Patient Leader Hero Award and the Best In Show on Facebook in 2018, the 2019 Fibro Warrior Award from the Fibromyalgia Care Society of America, the Warrior of the Week in 2020 from UK Fibromyalgia. In May 2021 Kristal was presented with a Commendation from the State of Ohio House of Representatives for her advocacy work through Veteran Voices For Fibromyalgia. In August 2022, Kristal was chosen by Health Union, through the Social Health Awards patient advocacy platform, as the recipient of the 2022 Lifetime Achievement Award. In addition, in May 2022 Kristal advocated for and obtained a Proclamation designating May 12th as Fibromyalgia Awareness Day from the State of Ohio Governor. Kristal previously served 3 years as a Board of Trustee for the Fibromyalgia Care Society of America along with previously served as a Board Member on the Wego Health Patient Advisory Board. Kristal is currently a member of Society For Participatory Medicine, Social Health's Patient Leader Network, a Co-Op member of Savvy Cooperative and a member of the American Legion. Kristal's latest medical challenge has been heart related. Since February is heart health month and Valentines Day happens to be on a Tuesday this year (we post our episodes on Tuesdays) what better of a guest for this week? SOCIAL MEDIA: FACEBOOK: The Fibromyalgia Pain Chronicles: https://www.facebook.com/FibroPainChronicles Veteran Voices For Fibromyalgia: https://www.facebook.com/VeteranVoices4Fibro INSTAGRAM: Kristal @ The Fibromyalgia Pain Chronicles: http://www.instagram.com/thefibropainchronicles YOUTUBE: The Fibromyalgia Pain Chronicles: https://www.youtube.com/feed/my_videos Veteran Voices For Fibromyalgia: https://www.youtube.com/feed/my_videos WEGO HEALTH: https://app.wegohealth.com/Kristal 11 Tips For Keeping Your Heart Healthy As A Woman Heart disease is the leading cause of death for women in the United States, accounting for one in four deaths each year. Cardiac events, such as heart attacks and strokes, are also more common in women than men. While there are many factors that contribute to heart disease, there are also a number of things that women can do to protect themselves. These include maintaining a healthy weight, quitting smoking, exercise, and knowing the signs and symptoms of a heart attack. Here are eleven tips for keeping your heart healthy as a woman. These tips are based on the latest scientific evidence and are designed to help you lower your risk of heart disease and live a healthier life. 1. Heart Disease is the Leading Cause of Death for Women in the United States: The Centers for Disease Control and Prevention (CDC) reports that heart disease is the leading cause of death for both men and women in the United States. The American Heart Association (AHA) says that about 1 in every 4 female deaths is attributed to heart disease. A variety of lifestyle choices and risk factors can contribute to the development of heart disease. It is important to be aware of them and take steps to reduce your risk. 2. Women Often Experience Different Symptoms of Heart Disease Than Men: Though men and women both experience cardiovascular events, it has been found that women can experience different symptoms than men. Women may experience shortness of breath, fatigue, or pain in the upper back and neck, aside from chest pain. Women may also have a higher risk of developing atypical heart attack symptoms than men. If something doesn't seem quite right, it is important to seek medical attention right away. 3. There are Certain Lifestyle Choices That Can Help Keep Your Heart Healthy: Making certain lifestyle changes can help reduce your risk of heart disease. For example, it is important to maintain a healthy weight and exercise regularly. Additionally, it is important to pay attention to your food choices and quit smoking. All of these measures can help reduce the risk for cardiovascular events. 4. Pay Attention to Your Family History: It is important to pay attention to your family history, as your risk for heart disease can be higher if there is a family history of heart disease. It is important to speak with your doctor about your family history and determine if you need to be tested for any genetic heart diseases. 5. Manage Your Mental Health: Mental health can also be an important factor when it comes to heart health. Studies have found that stress, depression, and anxiety can all increase the risk of cardiovascular events. Taking steps to manage your mental health, such as talking to a therapist or engaging in mindfulness practices, can help reduce this risk. 6. Be Physically Active: Regular physical activity is one of the most important things you can do for your heart health. It can help reduce your risk of cardiovascular events, such as heart attacks and strokes. Aim to be physically active for 30 minutes five days a week. Activities such as walking, biking, and running are all good options. 7. Eat a Healthy Diet: Eating a healthy diet is an important part of maintaining a healthy heart. The AHA recommends following an eating plan that is high in fiber and low in saturated and trans fat. This includes eating more fruits and vegetables, whole grains, lean proteins, and healthy fats. 8. Don't Smoke: Smoking can damage the cells in the coronary arteries, which can increase the risk of heart disease. If you smoke, it is important to quit. It can take time and there are a variety of resources available to help. 9. Get Your Cholesterol and Blood Pressure Checked Regularly: High cholesterol and high blood pressure can both make it more difficult for your heart to work properly, so it is important to get them checked regularly. Your doctor can help you decide how often these tests should be done. 10. Keep Diabetes Under Control: Diabetes can also increase the risk of heart disease. Keeping your diabetes under control can help keep your heart healthy. This means managing your blood sugar levels, eating a healthy diet, and exercising regularly. 11. Make Sure You're Getting Enough Sleep: Inadequate sleep can increase the risk of heart disease. Aim to get seven to eight hours of sleep each night and speak to your doctor if you are having trouble sleeping. Advantage of Women's Health Screenings: Annual wellness physicals or women's health screenings can help detect certain medical issues early on, which can be beneficial for heart health. These screenings may include electrocardiograms (ECG) or other tests to check your heart health. Conclusion: Following the tips outlined above can help reduce your risk of heart disease and help keep your heart healthy as a woman. It is important to remember that each person is unique and it is important to speak with your doctor to understand what is best for your individual needs.
Gabe Howard is an award-winning podcast host, author, and sought-after speaker. In 2003, he was diagnosed with bipolar and anxiety disorders after being committed to a psychiatric hospital. Gabe hosts the weekly Inside Mental Health podcast for Healthline Media and is the author of Mental Illness is an Asshole and Other Observations. He has appeared in numerous publications, including bipolar magazine, WebMD, Healthline.com, and the Stanford Online Medical Journal. He's been a guest on several podcasts, including The One You Feed, The Savvy Psychologist, and Out of Patients. Among his many awards, he is the recipient of Mental Health America's Norman Guitry Award and received a resolution from the Governor of Ohio naming him an “Everyday Hero.” The Inside Mental Health podcast has been honored by both NAMI (National Alliance on Mental Illness) and WEGO Health. Gabe makes his home in the suburbs of Columbus, Ohio. He lives with his supportive and patient wife, Kendall, and a Miniature Schnauzer dog that he never wanted, but now can't imagine life without. Learn more at gabehoward.com. You can purchase his book here: https://amzn.to/3kahwEI
Welcome back to Therapy Chat! This week, host Laura Reagan, LCSW-C speaks with Dr. Christina Hibbert, a clinical psychologist who was diagnosed with Triple Negative breast cancer with the BRCA-1 mutation and is now cancer-free, 3 years and 13 surgeries later. She shares her experience of having past trauma come to the surface while she was dealing with incredibly challenging physical and emotional health issues. She talks openly about the missing pieces in breast cancer treatment and recovery, and the difficulty which many people with chronic illness will recognize, of having to be your own advocate as doctor after doctor dismisses your symptoms. During Breast Cancer Awareness Month, and Domestic Violence Awareness Month, this is a very timely conversation that will benefit any patient who is struggling to be heard by their treatment team, as well as any healthcare provider. Dr. Christina's message is raw and honest, compassionate, hopeful and constructive. Follow her on Instagram and Facebook to learn how she is doing now! Dr. Christina Hibbert is the #1 bestselling author of the award-winning memoir, This Is How We Grow, & of 8 Keys to Mental Health Through Exercise, Who Am I Without You, and the forthcoming Mastery Of Motherhood. Dr. Hibbert is a clinical psychologist, speaker, social media influencer, and thought leader in the areas of maternal & women's mental health, grief/loss/trauma, self-worth, personal growth, & breast cancer. She is the host of both Mastery of Motherhood (M.O.M.) podcast and Like a Watered Garden podcast and creator of her award-winning website and blog “DrChristinaHibbert.com.” Christina is also a “Breast Cancer Warrior,” overcoming triple negative breast cancer and the BRCA1 genetic mutation through chemotherapy, cold-capping & 13 surgeries. She was named Most Inspirational Women's Health Professional 2018 & 2019 and won Best in Show: Blog 2020 for her work as a patient leader in the WEGO Health awards. A wife and mother of six, Christina was deeply honored to be named Mother of The Year, AZ 2018. Resources Follow Dr. Christina Hibbert on Instagram here and on Facebook here. Find Dr. Christina Hibbert's book, This Is How We Grow, on Amazon here. Visit Dr. Christina Hibbert's website here. Follow Therapy Chat on Instagram here. Sign up for Therapy Chat's e-mail list here. Thank you to TherapyNotes for sponsoring this week's episode! TherapyNotes makes billing, scheduling, notetaking, and telehealth incredibly easy. And now, for all you prescribers out there, TherapyNotes is proudly introducing E-prescribe! Find out what more than 100,000 mental health professionals already know, and try TherapyNotes for 2 months, absolutely free. Try it today with no strings attached, and see why everyone is switching to TherapyNotes. Now featuring E-prescribe. Use promo code "chat" at www.therapynotes.com to receive 2 FREE months of TherapyNotes! Thank you to The Receptionist for iPad for sponsoring this week's episode. It's the highest-rated digital check-in software for therapy offices and behavioral health clinics, used by thousands of practitioners across the country. Register for a 14-day free trial of The Receptionist for iPad by going to www.thereceptionist.com/therapychat and when you do, you'll also receive your first month free when you sign up. This episode is also sponsored by Trauma Therapist Network. Learn about trauma, connect with resources and find a trauma therapist near you at www.traumatherapistnetwork.com. We believe that trauma is real, healing is possible and help is available. Therapists, registration opens in late October 2022 Trauma Therapist Network membership. Join a compassionate and skilled group of trauma therapists for weekly calls focused on Self Care, Case Consultation, Q&A and Training led by Therapy Chat host Laura Reagan, LCSW-C. Get on the waiting list now to be the first to know when registration opens! Sign up here https://go.traumatherapistnetwork.com/join Podcast produced by Pete Bailey - https://petebailey.net/audio
Are you thinking about a career in genetic counseling? Maybe you are a current student or even a recent grad… Then you have to head over to our social media for a MAJOR giveaway right now! We have assembled 15 genetic counselors, including myself and some other familiar faces/voices. All 15 of us are going to be mentors for a lucky 15 listeners. That's right you can meet with us for a 1 hour Zoom call for 1:1 mentoring. This is a giveaway so you just go to our Instagram, Facebook, and Twitter, and my LinkedIn to enter for FREE! For 10 extra entries you can leave a rating/review on Spotify or Apple then you email that to info@DNApodcast.com and I will personally give you an extra 10 entries. Shoutout to GC Prep for sponsoring. Use code “DNATODAY” for a discount on their mentor services. (SPONSORED)Our guest this week is fellow genetics podcaster, Effie Parks, to discuss CTNNB1 Syndrome.When she learned that her son, Ford, had been born with an extremely rare genetic condition – CTNNB1 syndrome – she dove into the world of advocacy. Now, she is the host of her own podcast, Once Upon A Gene where she speaks to others about their journey through life with rare disease. Since the launch of the podcast, Once Upon A Gene was awarded “Best In Show Podcast” by WEGO Health. Podcast Magazine recognized Effie as one of the 40 Under 40 Podcasters and she has been nominated for two Champion of Hope awards from Global Genes. Her mission is to learn, lift voices of the community, connect people to resources and to leave this world better than she found it for others in the rare disease world. Our host, Kira Dineen was recently featured on Episode #143 of Once Upon a Gene where genetic counselors shared impactful rare disease stories!On This Episode We Discuss:Effie's son Ford's diagnosis with a rare disorder, CTNNB1 syndromeNavigating a condition that only 50 other people in the world hadHow CTNNB1 Syndrome affects the bodyWhat resources Effie wishes she knew about when Ford was diagnosedAdvice for other parents in the rare disease space who are thinking about having another childFord's feature in Beyond The DiagnosisMeeting other parents and caregivers of people with rare diseasesWhere people can listen to the podcastEffie's son, Ford, was recently cited as the inspiration for a new, accessible and inclusive playground in Washington, you can read the article here! We also wanted to share this awesome graphic that Effie made that includes a detailed list of different things that people can do to support a rare disease family! If Effie's story piqued your interest, check out this blog post entitled “Life Under the Looking Glass” written by Katie Lloyd about her experience battling postpartum depression all while grappling with a diagnosis.To learn more about rare diseases like CTNNB1 Syndrome, visit the National Organization for Rare Disorders, Global Genes, and the EveryLife Foundation. You can follow Effie and Once Upon a Gene on Twitter, LinkedIn, and Instagram!Stay tuned for the next new episode of DNA Today on September 30th, 2022 where we'll be talking to Chris Brandt and Sandesh Patel about Mosaicism! New episodes are released on Fridays. In the meantime, you can binge over 200 other episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Today”. Episodes since 2021 are also recorded with video which you can watch on our YouTube channel. DNA Today is hosted and produced by Kira Dineen. Our social media lead is Corinne Merlino. Our video lead is Amanda Andreoli. See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, DNApodcast.com. Questions/inquiries can be sent to info@DNApodcast.com. Support for DNA Today comes from the People for The Ethical Treatment of Animals (also known as PETA), whose scientists have developed the research modernization deal, a strategy to phase out ineffective experiments on animals with high-tech, state-of-the-art research. PETA has collected an abundance of evidence demonstrating that the use of animals in biomedical research hinders scientific progress and puts patients at risk. Learn more at PETA.ord/NewDeal. (SPONSORED)TrakGene has designed a genetics electronic health record. Here's what it features: pedigrees, demographic data, genetics information, risk tools, and sophisticated reporting, all within a clinician designed workflow. It integrates with other clinical genetic software, databases, and hospital information systems to maintain accurate patient records.Go check it out at TrakGene.com. And keep your eye out for our full episode interviews with TrakGene coming soon to DNA Today. (SPONSORED)PerkinElmer Genomics is a global leader in genetic testing focusing on rare diseases, inherited disorders, newborn screening, and hereditary cancer. Testing services support the full continuum of care from preconception and prenatal to neonatal, pediatric, and adult. Testing options include sequencing for targeted genes, multiple genes, the whole exome or genome, and copy number variations. Using a simple saliva or blood sample, PerkinElmer Genomics answers complex genetic questions that can proactively inform patient care and end the diagnostic odyssey for families. Learn more at PerkinElmerGenomics.com. (SPONSORED)
On this episode of the podcast, I was joined by Jane Sarasohn Kahn of Health Populi and THINK-Health. Jane and I discuss: - US Healthcare System - Healthcare economics before Healthcare economics - Her Book: Health Consuming - Health Consuming vs. Health Citizenship - US vs. European Healthcare systems Jane is a health economist, advisor and trend-weaver to organizations at the intersection of health, technology and people. Jane founded THINK-Health after working with health care consultancies in the US and Europe. Jane's clients span the health/care ecosystem: technology, pharma and life sciences, providers, plans, financial services and consumer goods. She founded the Health Populi blog in 2007. Jane advises on strategy via environmental analysis, scenario and strategic planning. She is on the advisory boards of CanSurround, CAQH's U.S. Health Efficiency Index, the Health 2.0 Conference, healthBank, HIMSS Connected Health Committee, the Society for Participatory Medicine, Stupid Cancer, and WEGO Health. In her community of Phoenixville, PA, Jane sits on the Board of The Clinic, a free clinic for residents. Jane is a frequent speaker, listed with AHA's Speakers Express and Executive Speakers Bureau.
Snap Out of It! The Mental Illness in the Workplace Podcast with Natasha Tracy
Snap Out of It! is pleased to speak with award-winning podcaster and mental health advocate Gabe Howard. Gabe has lived with bipolar and anxiety disorders since 2003. Gabe has a harrowing tale of when he was first diagnosed with bipolar disorder. Not only can he speak to what it was like to work with bipolar disorder before being diagnosed, but he can also speak to what it was like to “come out” at work and, finally, be fired because of his bipolar disorder. This is an interview you can't miss. See here for transcripts and more about the podcast: http://snapoutofitpodcast.com Note: There is a small amount of profanity in this interview. About Gabe Gabe Howard hosts the weekly Inside Mental Health podcast for Healthline Media and is the author of Mental Illness is an Asshole and Other Observations. He has appeared in numerous publications, including bipolar magazine, WebMD, Healthline.com, and the Stanford Online Medical Journal. He's been a guest on several podcasts, including The One You Feed, The Savvy Psychologist, and Out of Patients. Among his many awards, he is the recipient of Mental Health America's Norman Guitry Award and received a resolution from the Governor of Ohio naming him an “Everyday Hero.” The Inside Mental Health podcast has been honored by both NAMI (National Alliance on Mental Illness) and WEGO Health. Gabe makes his home in the suburbs of Columbus, Ohio. He lives with his supportive and patient wife, Kendall, and a Miniature Schnauzer dog that he never wanted, but now can't imagine life without.
Join DIma and Lena as they discuss issues in women's health and how they are affected by sickle cell disease. YouTube: Lena Lavish The Queen Warrior Herself: https://www.youtube.com/user/lenaharv Instagram: @lenalavish100 Read my articles: sickle-cell.com This episode was brought to you in part by Unleashing Royalty: A R.O.Y.A.L Formula to Help You Walk into Queendom with Purpose. Available on: Amazon https://amzn.to/3IJSi7n Barnes & Noble https://bit.ly/3MnyLMa #Throughthepain For Business: Ads, Mention, Unboxing, Posts, Collabs: Email- Contact@ThroughThePain.org Join the WEGO Health network today! https://app.wegohealth.com/register/i... Follow #ThroughThePain: Social Media- https://linktr.ee/ThroughThePainPodcast Website- www.throughthepain.org Our Production Team: Executive Producer -Dima Hendricks Producer- Michael Hendricks --- Send in a voice message: https://anchor.fm/throughthepain/message Support this podcast: https://anchor.fm/throughthepain/support
Interview with Sickle Cell Survivor Wunmi Bakare. Wunmi is a patient ambassador and sickle cell advocate for Health Union and AllStripes. She was diagnosed with the most severe type of sickle cell disease - Hemoglobin SS - at 18 months but participated in a clinical trial at the National Heart, Lung and Blood Institute (NIH-NHLBI) where she received an allogeneic stem cell transplant. While still facing challenges, Bakare thrives as the Director of her own public relations agency and advocates for the global sickle cell community, home and abroad. Now 34, she works across diverse disciplines - Consumer Brands, Healthcare & Non-Profit - focusing on brand partnerships, content creation and influencer marketing. In 2021, she launched “The Diary of a #SickleCellProdigy” Content Series, in partnership with WeGoHealth and the Cure SCD Initiative. The awareness campaign gives audiences a closer look at a patient's life with and without sickle cell disease. “My goal is to empower and support the next generation of patients with invisible disabilities like sickle cell,” says Bakare. “Sickle Cell is a disease, it is not a verdict of who we are as people. For me, it is the rock on which I've built my perfectly imperfect life.” Her legacy is advocating for social causes close to her heart including child adoptions and gender equity. She is an alumnus of the University of Texas at Austin and the President of The Gift of Adoption Fund - WA Chapter. This episode was brought to you in part by Unleashing Royalty: A R.O.Y.A.L Formula to Help You Walk into Queendom with Purpose. Available on: Amazon https://amzn.to/3IJSi7n Barnes & Noble https://bit.ly/3MnyLMa Make sure you follow us on social media. https://linktr.ee/ThroughThePainPodcast Our Production Team: Executive Producer -Dima Hendricks Producer- Michael Hendricks --- Send in a voice message: https://anchor.fm/throughthepain/message Support this podcast: https://anchor.fm/throughthepain/support
Join Dr. Gretchen this week as she chats with Cathy Chester, a true icon & advocator in the MS community. In this episode Cathy shares her insights into how far the knowledge & treatment of MS has come since her own diagnosis, and how she has adapted along with way. Diagnosed with multiple sclerosis in 1986 Cathy has been advocating for the MS community since then, prior to the internet or any approved MS medications. She is a certified health advocate and patient leader and created an award-winning blog, An Empowered Spirit to empower, inspire, and educate the MS community. Cathy was a regular contributor for several MS and health websites and has served as a consultant on patient panels for many pharmaceutical and health companies. Her unique story has been featured in industry newsletters and magazines that include Katie Couric's Wakeup Call, Reader's Digest, Health.com, and Woman's Day, and her writing has appeared in various media outlets that include The Huffington Post, National Multiple Sclerosis Society, Multiple Sclerosis Association of America, Everyday Health, PatientsLikeMe, BetterAfter50, Erma Bombeck Writers' Workshop, The Mighty and Women at Woodstock. Cathy has been featured in several videos and on the radio for PBS, Harvard Radio, Health.com, The Consortium of Multiple Sclerosis Centers, Touch Medical Media, Healthline, and WHOA! Network. Among other awards she's received she's proudest to be awarded the Lifetime Achievement Award from WEGO Health. Find "An Empowered Spirit" (Cathy's Award Winning Blog) at AnEmpoweredSpirit.com Additional Resources: https://www.doctorgretchenhawley.com/insider Reach out to Me: Gretchen@DoctorGretchenHawley.com Website: www.MSingLink.com Social: ★ Facebook: https://www.facebook.com/groups/mswellness ★ Instagram: https://www.instagram.com/doctor.gretchen ★ YouTube: https://www.youtube.com/c/doctorgretchenhawley?sub_confirmation=1 → Game Changers Course: https://www.doctorgretchenhawley.com/GameChangersCourse → Total Core Program: https://www.doctorgretchenhawley.com/TotalCoreProgram → The MSing Link: https://www.doctorgretchenhawley.com/TheMSingLink
Deborah Vick is dedicated to serving her family, community, and those battling chronic illnesses, to the best of her abilities. Deborah is married to her college sweetheart and is a mother to two loving boys, a service dog and a newly adopted cat. She earned her BA in Political Science, a master's degree in Higher Education with a focus on diversity inclusion, and she continues to pursue the completion of her law degree. She has also completed various continuing education programs including mindfulness coaching and STEAM programs for elementary schools. Deborah continues to overcome the challenges of her various disorders including myasthenia gravis, Ehlers-Danlos and dysautonomia. Myasthenia gravis is an autoimmune disorder in which the antibodies attack the receptors from the brain to the muscles causing severe muscular weakness. Ehlers-Danlos is a series of connective tissue disorders in which the collagen in the body cannot tighten after expansion, creating severe pain from loose joints, subluxations, dislocations and in many cases, impacting internal organs. Dysautonomia impacts the autonomic system, including the ability to regulate blood pressure, breathing and bladder control. This also can lead to frequently, but temporarily, losing consciousness. These disorders do NOT define Deborah. She has used these experiences to help strengthen her will to persevere, and to help share her story to empower others. 2021 has been a milestone year for Deborah. Not only has she found her voice, but she has also received recognition by her peers through nominations for several WEGO Health awards, participated in several panel discussions at rare disease conferences, co-founded RareABILITY (newly formed nonprofit), and has the honor of representing California in the Ms. Wheelchair USA 2022 competition. Guests Social Media Links & FREE Gifts : Deborah's Link Tree HERE Sponsor Debroah HERE for MS. Wheelchair USA Competition HERE ------------------------------------------------------------------------------------------------------------------------------- Stay up to date by signing up for the newsletter HERE This episode is sponsored by Anchor: The easiest way to make a podcast with no minimum listenership. Htts://anchor.fm/crystalballclarityofitall FTC Disclaimer- This recording is sponsored by anchor. Legal Disclaimer- Please do not take anything in this podcast as legal or medical advice. I am not an attorney or a medical physician. This is strictly information entertainment. Reach out to a licensed professional. If you or someone you know needs to speak with someone, please call the National Suicide Prevention Lifeline at 1-800-273-8255 or visit https://suicidepreventionlifeline.org/ --- This episode is sponsored by · Anchor: The easiest way to make a podcast. https://anchor.fm/app Support this podcast: https://anchor.fm/crystalballclarityofitall/support
Today I am joined by Tiffany Kairos, an epilepsy advocate who has made such an impact on our community! She shares her story, her rebranding from The Epilepsy Network (TEN) to Rise Above Epilepsy, and so much more. You can find her via WEGO Health and all social media links are located here
From Wheels to Heels with Terri-Louise. *********************************** Talking with The author of Paralysis to Heels about her journey as an MS warrior and the genetic MS link they say doesn't exist . *********************************** Go like , subscribe and ring the Bell to never miss an episode ❤️ *********************************** Sick and Sickening is a Bi-weekly Podcast. Hosted by the Multiple Sclerosis Fashionista follow them on : https://bit.ly/3gAatQH They are A MS Warrior advocating for Inclusion in the health sector. Disabled Blogger & Health & Sex Advocate. Podcast Host of https://bit.ly/3DiaMJX The Chronically Fabulous Podcast Sharing The Stories of Chronic Illness Warriors #WEARENOTINVISIBLE *********************************** Terri-louise brown is a 33-year-old mother of 1, diagnosed with Multiple Sclerosis in early 2016 . When she became paralysed from the waist down after catching the flu. After getting her head around her diagnosis. She vowed that she would make the disease famous. She started a charity in October 2016 called Talks With M.S which is a big sister/brother platform for people to speak freely about their diagnosis. Her research and knowledge of Multiple Sclerosis started back in 2010 when her younger brother got diagnosed . Little did she know years later it would also be her own reality and more personal than ever expected. She has also written a self- published mini biography which is based on recent life events including her personal journey with Multiple Sclerosis. She works within the local government and enjoys seeing the inclusion surrounding disabilities both visible and invisible. Social media has allowed her to meet new people facing the same challenges she has , and it has been a great experience that she hopes continues. She has been nominated for awards from the MS Society aswell as this year being nominated for 3 WEGO Health awards. Follow Terri on Instagram https://bit.ly/3mTqgNa And Talks with MS https://bit.ly/3mZXR87 *********************************** Disclaimer: By no means is the conversations on Sick and Sickening an alternative to medical advice. Please contact your health care advisor before changing or adding to your personal care routine . ***********************************
Today's Interview is with "The Cathy Chester". Cathy has been an MS influencer since before the time of "infleuencers". Cathy Chester has lived with multiple sclerosis since 1986. This blog is her platform to empower, educate and inspire others with MS to live a rich, full life despite living with a chronic illness.Cathy's mission is to help others on their own MS journey to lead a healthy, hopeful and enriching life – the best life possible within each person's abilities.“No matter what adversity you face, life is still delicious.” ~ Cathy ChesterCathy's approach focuses on the need for care of physical, emotional and spiritual needs. As a leading MS advocate she also uses her voice to share the latest news and information about MS and how others can find the answers they need.As an award-winning writer and certified health advocate, Cathy is dedicated to helping other MSers feel less lonely, isolated and overwhelmed than she did when she was diagnosed in 1986. She is passionate about helping those with MS feel better about themselves and the world around them.Most recently Cathy received the Lifetime Achievement Award from WEGO Health.https://www.wegohealth.com/shifrachesterThings discussed in podcast:Grammarly - Writing Assistanthttps://www.grammarly.com/Ways to Reach Cathy:Here is her Blog:https://anempoweredspirit.com/cathychester/Instagram: @thecathychesterFacebook: @cathy.chester1You can find Kathy Chester atdisruptfitnessgym@gmail.commoveitorloseit109@gmail.comInstagram - @msmoveitorloseit @disruptfitnessgymPrevinex - Use the same clinically effective supplements that promote longevity, performance and everyday health as Kathy does.https://www.previnex.com/Use promo code disrupt15 to get 15% offHere are some additional products that help Kathy deal with beating the Heat and Migraines. Take advantage of the coupon code.Koldtec - Cool Head WrapKOLD10To save $10 off every item in store.2 items = $20 savings3 items = $30 savingshttps://www.koldtec.com/Cold bean bag Releafpack. 15% discount use code Disrupt15https://www.releafpack.com
If you're new to the chronicpreneur world, then this episode is packed full of info-bombs!Julie Croner is on a mission to advocate for ALL advocates. A psoriatic arthritis patient leader, she's also the Vice President of the Patient Leader Network at WEGO Health and has been featured by Stanford Medicine X, the National Psoriasis Foundation, Everyday Health, WebMD, HealthLine, and more. Julie is one busy chronicpreneur, as well as being a very involved mom! Listen in to find out what drives her, as she talks about her own journey to make her passion her career, before covering her work at WEGO Health and the support that their incredible community of patient leaders offers. In this episode:Julie's struggle to accept her diagnosis and subsequent depressionHow she began connecting with patients online as a way to educate herselfHow a fateful trip to Florida relocated her badass gene and why she started her blog the very next day The benefit of putting yourself out there as you never know where it will leadHow Julie gradually realized that she could get paid work because of her experiences, not despite themInformation about how Julie became involved with WEGO Health and her work thereWhere to go to find out more about Julie and WEGO HealthResources:Visit the Patients Getting Paid website to learn more about and JOIN the PGP communityJulie's blog, ItsJustABadDay.comIt's Just A Bad Day on Twitter, Facebook, and InstagramVisit WEGO Health and connect on Twitter, Facebook, and Instagram**Be sure to join us on the Patients Getting Paid Facebook and Instagram pages AND get on the PGP email list to stay updated on all things PGP!Special thanks to Steve Woodward at PodcastingEditor.com
Hey Peeps! Welcome back to another episode of the Because We are Strong Podcast, where we sit down every week to hear the untold stories of those in the rare disease and chronic illness community. This week we are sitting down with Seth, a rare disease fighter who founded Our Odyssey, a foundation that connects young adults who have rare diseases with emotional and social support.Connect With Seth:To learn more about Our Odyssey head to www.ourodyssey.orgTo learn more about WEGO Health head to www.wegohealth.com and sign up for your account today!People can follow me on Twitter/Instagram @srotberg15_____________________________________________________ That's why the BC Schizophrenia Society has launched a brand new podcast, called Look Again, Mental Illness Re-examined. Host Faydra Aldridge talks to doctors, families, and people with lived experience about how to recognize mental illness, and the specific treatments that can help. Check it out. They'll really challenge you to“look again” at what you think you know about mental illness. Support the show (https://www.patron.com/findyourrare)
In this episode, we discuss the topic of pacing, routines, and organizing our lives when it comes to life with chronic pain. We chat about a lack of spontaneity in our lives, how we really feel about sticking to routines, and so much more in such a tiny episode! Podcast Transcription Podcast Translation (Spanish) . Learn More About the Fibromyalgia Care Society of America: Website: https://www.fibro.org/ Facebook: https://www.facebook.com/fibrocares Instagram: https://www.instagram.com/fibrocares/ Twitter: https://twitter.com/fibrocares . Learn more about WEGO Health and view our Nomination Page! Endorse Us for Best In Show: Podcast and/or Advocating For Another! . Leave us a Voice Message
In this episode, Caraline is joined by fellow chronic illness warrior, advocate, and owner of the Spoonie Sister Shop on Etsy, Michelle Griffith. We discuss her personal journey battling multiple chronic illnesses, how she came to start her shop and her wonderful and uplifting social media presence. Podcast Transcription Podcast Translation (Spanish) . Learn More About the Fibromyalgia Care Society of America: Website: https://www.fibro.org/ Facebook: https://www.facebook.com/fibrocares Instagram: https://www.instagram.com/fibrocares/ Twitter: https://twitter.com/fibrocares . Visit Spoonie Sister Shop On:
Seth Rotberg joined the HD Insights Podcast for this episode. Seth is a patient advocate, community connector, and motivational speaker who is passionate about bringing his personal experience to support the health community. His passion is driven by his mother's 17-year battle with the rare, genetic disease known as Huntington's Disease (HD). Five years after learning about his mother's diagnosis, Seth went through genetic testing and found out he tested positive for HD and may end up like his mom one day. In 2019, Seth co-founded the nonprofit, Our Odyssey, to provide year-round social and emotional support to young adults impacted by a rare or chronic condition. He has a master's in nonprofit management from DePaul and currently resides in Cambridge, MA. Professionally, he works as the Patient Leader Recruitment Manager at WEGO Health. To learn more about Seth, visit https://www.sethrotberg.com. For more information about Our Odyssey, go to https://ourodyssey.org.
In this episode, we discuss the topic of chronic illness comparison. We talk about what it's like to compare yourself to "healthy people", to other people living with chronic illness, as well as who you were before you were diagnosed. Podcast Transcription Podcast Translation (Spanish) . Learn More About the Fibromyalgia Care Society of America: Website: https://www.fibro.org/ Facebook: https://www.facebook.com/fibrocares Instagram: https://www.instagram.com/fibrocares/ Twitter: https://twitter.com/fibrocares . Vote For Skye | People's Choice | Miss Florida USA Visit: https://www.missfloridausa.com/voteformiss 1. Look for "Skylar Allen" and click on her photo 2. For delegate information, select "Miss Florida USA" and type in "Skylar Allen Miss East Naples, USA" 3. Choose the amount you'd like to donate to a charity of the delegate's choosing 4. Give yourself a pat on the back because you did something awesome! . Learn more about WEGO Health and view our Nomination Page! Endorse Us for Best In Show: Podcast and/or Advocating For Another! . Leave us a Voice Message
In this episode, we interview fellow advocate and chronic illness warrior Emma Taylor. Emma has worked with the National Fibromyalgia Association for many years as their Juvenile Spokesperson after being diagnosed with Fibromyalgia at age thirteen. We spoke with her about her personal journey battling a number of chronic illnesses, discussed the ups and downs of life as an advocate on social media, and living your truth unapologetically. Podcast Transcription Podcast Translation (Spanish) . Learn More About the Fibromyalgia Care Society of America: Website: https://www.fibro.org/ Facebook: https://www.facebook.com/fibrocares Instagram: https://www.instagram.com/fibrocares/ Twitter: https://twitter.com/fibrocares . Follow Emma Taylor On:
In this episode, we dive into the topic of working with Fibromyalgia. Skye and Caraline share their experiences as employees with a chronic illness, share their best tips for creating the best workplace for yourself, and go on a small but important rant about the problem with bathroom stalls. Podcast Transcription Podcast Translation (Spanish) . Learn More About the Fibromyalgia Care Society of America: Website: https://www.fibro.org/ Facebook: https://www.facebook.com/fibrocares Instagram: https://www.instagram.com/fibrocares/ Twitter: https://twitter.com/fibrocares . Check Out These Wonderful Resources: NTI@Home Chronically Capable . Learn more about WEGO Health and view our Nomination Page! . Leave us a Voice Message
In this episode, we interview fellow Fibro warrior, advocate, and Army Veteran Kristal Kent. We discuss her journey with Fibromylagia, how she came to create the advocacy groups Fibromyalgia Pain Chronicles and Veteran Voice For Fibromyalgia, and the stigma surrounding mental health in today's society. Podcast Transcription Podcast Translation (Spanish) . Learn More About the Fibromyalgia Care Society of America: Website: https://www.fibro.org/ Facebook: https://www.facebook.com/fibrocares Instagram: https://www.instagram.com/fibrocares/ Twitter: https://twitter.com/fibrocares . Check Out Kristal's Advocacy Groups: The Fibromyalgia Pain Chronicles Veteran Voices For Fibromyalgia . Learn more about WEGO Health and view our Nomination Page! . Leave us a Voice Message
In this episode, we discuss the topic of traveling with Fibromyalgia and share our best tips and tricks that we've learned throughout the years. We also share the exciting news that we were recently nominated for Best Podcast at the 2021 WEGO Health Awards! Podcast Transcription Podcast Translation (Spanish) . Learn More About the Fibromyalgia Care Society of America: Website: https://www.fibro.org/ Facebook: https://www.facebook.com/fibrocares Instagram: https://www.instagram.com/fibrocares/ Twitter: https://twitter.com/fibrocares . Learn more about WEGO Health and view our Nomination Page! . Leave us a Voice Message
Episode at a glance:Renee’s diagnosis journey after a decade of mystery symptomsHow rheumatoid arthritis has affected Renee’s parenting and homeschoolingRenee’s Christian faith helps her cope with challenging timesCheryl and Renee share their different treatment choices (western medicine and natural only approaches) and how important it is to respect each other despite different choicesHow Renee adopts an anti-inflammatory lifestyleThe dark side of focusing on wellness and diet: Renee shares about orthorexia, an unhealthy obsession with healthy foodWhy Renee started her Rheumatoid Arthritis Mamas Sisterhood Facebook groupSpeaker Bios:Renee is a former middle school teacher turned homeschooling mom of three. She’s been married for 17 years and lives in West Michigan. She started The Rheumatoid Arthritis Mama after her RA diagnosis in late 2017 when she began sharing her journey, faith, and experiences with RA openly and authentically on Instagram and Facebook. Since then, Renee has been interviewed by and featured in media outlets such as Healthline, Health Central, CreakyJoints, WEGO Health, Self Magazine, and more. Her Facebook support group, The Rheumatoid Arthritis Mamas Sisterhood, has nearly 2,000 members and she uses the group as a space for all women to come together regardless of their treatment choices to support one another, share their experiences, and connect with other autoimmune disease warriors. Renee has a passion to support and encourage other women (especially moms) who are battling autoimmune diseases. Her goal is to provide others with encouragement and hope, feel less alone, and inspire them to live their best lives despite battling autoimmune disease. Her newest endeavor, a podcast called Every Day with Autoimmune, is set to launch during the summer of 2021!Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for eighteen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.This episode is brought to you by the Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life with this condition.Episode links:Things discussed in episodehttps://www.nationaleatingdisorders.org/learn/by-eating-disorder/other/orthorexiaACR guidelines“Food freedom” Elizabeth Dahl - woman of wellness -Renee linksInstagram: https://www.instagram.com/the_rheumatoid_arthritis_mama/FB: https://www.facebook.com/TheRheumatoidArthritisMama/FB Support Group: http://www.facebook.com/groups/TheRheumatoidArthritisMamasSisterhood Arthritis Life Podcast, Practical Tips and Positive, Realistic Support - Facebook groupCheryl’s Arthritis Life freebies:Free Handout: Cheryl’s Master Checklist for Managing RAFree Training: Arthritis Life Hack Crash CourseArthritis Life Program LinksJoin the waitlist for Rheum to THRIVE, a membership community Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected.Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life with this condition.Cheryl’s Arthritis Life social media pages:Cheryl & Arthritis Life on InstagramCheryl’s website: Arthritis LifeArthritis Life Tiktok: @ArthritisLife Arthritis Life Facebook PageCheryl’s Twitter: @realcc Arthritis Life Youtube channelMedical disclaimer: All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.Here's the detailed show breakdown:2:14 - Renee’s journey getting her RA diagnosis after a decade of mystery symptoms. 5:23 - Renee has mixed emotions after her diagnosis: fear and confusion, mixed with relief that she finally had a definitive answer. 6:45: Discussion about how common it is for people with autoimmune symptoms to be dismissed by medical professionals.8:30 - How Renee’s three children have become more compassionate and sensitive as a result of mommy’s rheumatoid arthritis. How she initially tried to hide her diagnosis from them, and how she then realized she needed to be open with her children and husband. 13:15 - Renee opens up about her infertility journey and what she learned about communication, stress management and how to relinquish control.15:40 - How Renee structures her daily routine to suit her RA needs and her family’s needs.18:10 - How Renee’s Christian faith and eternal perspective helps her cope with RA.20:00 - Cheryl reflects on how, despite being an agnostic / atheist now, she carries forward lessons she learned as a child about the importance of unconditional love and the idea that everyone is worthy even if they have a health challenge.21:55 - Cheryl & Renee discuss how different people have different treatment paths and the divides within the RA community at times between a “natural” and a “western medication” approach. How Renee explored lifestyle and diet and worked with a functional medicine doctor. 26:35 - While Renee is able to control her RA with lifestyle and diet, she will never fault or judge anyone for taking medication.27:35 - Cheryl’s perspective as someone on three RA medications. The importance of differentiating as patients between sharing our experiences and then making the leap that *because* it worked for me, it 100% will work for you. Important to remember the current scientific evidence at the population level favors an early aggressive medication approach. 29:20 - How Renee’ focuses on an overall anti inflammatory lifestyle; an integrative approach - not “either/or” but “both.” 30:00 - How Renee’s experience with unkindness and negativity in Facebook groups inspired her to start her own group: the Rheumatoid Arthritis Mamas Sisterhood.34:05 - The dark side to obsessing over “healthy food,” you can become orthorexic - obsessive with eating only healthy or “clean” foods.36:35 - Patients are the expert on our own patient journeys but that doesn’t mean that we know what will work for another patient. 37:10 Renee shares the foods that trigger *her* inflammation. 38:45 - How Renee healed herself from her negative emotions around food and has built a healthy relationship with food through Elizabeth Dahl, a food coach. How to learn food is not the enemy. Learning to be careful about what she eats without being militant has helped her.43:35 - Discussion of disease-specific Facebook groups, how it’s important to have a place to vent sometimes but it’s also important to find groups that suit your needs, and if you’d like a more supportive and positive place there are groups for that too.47:25 - Concluding thoughts.
Specific topics include:Julie’s experience with multiple knee surgeries Avascular Necrosis leads to Complex Regional Pain Syndrome and Julie is bedriddenfor 6 monthsHow a trip to Disney World led to Julie’s epiphany that she should share her story and start a blogHow Julie put her Information Technology (IT) degree to use while tracking her symptoms and discovering her unique inflammation triggersHow Julie discovered the most important tools for living a healthy, full life with PSAJulie’s current role as a patient advocate with WEGO healthHow PSA affected Julie’s dating life and how she met her now husbandJulie’s experiences with pregnancy and parenting with PSAThis episode is brought to you by the Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life with this condition.Speaker Bios:Julie Croner, a psoriatic arthritis patient leader, is on a mission to advocate for ALL advocates. She's the Vice President of the Patient Leader Network at WEGO Health and was named to MM&M's inaugural class of 40 Under 40 in 2020. Julie has been featured by Stanford Medicine X, the National Psoriasis Foundation, Everyday Health, WebMD, HealthLine, and more. Cheryl Crow is an occupational therapist who has lived with rheumatoid arthritis for seventeen years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.Episode links:Julie’s sites:Blog: Itsjustabadday.com Twitter: twitter.com/justagoodlife Facebook: Facebook.com/itsjustabaddaynotlife Instagram: Instagram.com/itsjustabaddaynotlife LinkedIn: www.linkedin.com/in/juliecerrone Blog Email: justabaddaynotlife@gmail.com Work email: Julie.croner@wegohealth.com Organizations mentioned in this interview:WEGO HealthMothertoBaby - research studies of medications and pregnancy / breastfeedingMindful Mamas AppArthritis Life Podcast, Practical Tips and Positive, Realistic Support - Facebook groupCheryl’s Arthritis Life freebies:Free Handout: Cheryl’s Master Checklist for Managing RAFree Training: Arthritis Life Hack Crash CourseArthritis Life Program LinksJoin the waitlist for Rheum to THRIVE, a membership community Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. Rheumatoid Arthritis Roadmap, an self-paced online course Cheryl created that teaches people with RA how to confidently manage their physical, social and emotional life with this condition.Cheryl’s Arthritis Life social media pages:Cheryl & Arthritis Life on InstagramCheryl’s website: Arthritis LifeArthritis Life Tiktok: @ArthritisLife Arthritis Life Facebook PageCheryl’s Twitter: @realcc Arthritis Life Youtube channelMedical disclaimer: All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.Here's the show breakdown:1:00 - Introduction to Julie.2:00 - Julie’s winding journey to a psoriatic arthritis diagnosis: knee surgeries / swelling from fifth grade until after college and during work as an Information Technology (IT) consultant.4:55 - Julie gets the adult diagnosis of psoriatic arthritis (PSA) and her rheumatologist helps get it under control. She’s able to connect the dots of her chronic health issues in retrospect and see how it all relates to psoriatic arthritis (PSA).8:24 - Julie also experiences avascular necrosis in the femur bone (leg) which led to complex regional pain syndrome (CRPS). She started connecting to other patients online, got medication for PSA and started exploring diet and lifestyle. 9:48: Julie researches anti-inflammation lifestyle approaches, and uses her IT consultant skills to make an excel spreadsheet to track everything (food, movement, mood, medications, etc) for 6 months and discovered her unique inflammation and flare triggers. 10:55 The BEST thing she did in her journey!11:20 - Julie discovers that her body is sensitive to food triggers. She discovers that gentle movement, meditation and mindfulness helps her. She continues going on and off medications when needed. 12:40 - Cheryl reflects on the importance of discovering your own unique triggers and not thinking there is a one size all solution. 14:00 - Julie’s worst food triggers for joint inflammation. (15:12) 15:44 - Julie is bedridden for 6 months due to her Avasular Necrosis and is depressed. Her parents take her to DisneyWorld and she has an epiphany after doing a singing competition! She decides to share her story through starting a blog: “It’s just a bad day not a bad life.”19:20 - After being on disability for four years, she decides to focus on a career in patient advocacy rather than IT consulting.20:30 - Julie starts working for WEGO Health, a network of patient leaders. She helps patients and loved ones use their story and get connected to companies wanting their insights.23:40 - Why Julie thinks it’s so important for patients to share our stories: how she found an answer to her avascular necrosis due to seeing another patient’s story online.26:50 - How Julie’s health conditions affected her dating life, and how she met her husband. Her husband said, “You talk like you USED to be great, and the person I see IS really great! (28:13)”30:00 - How did PSA affect her family planning with her spouse who is in the army. When pregnant she felt very nervous and overwhelmed. She signed up for a MothertoBaby study.33:45 - During her first pregnancy PSA went into remission, psoriasis in 1st trimester. Second pregnancy didn’t go into remission. 35:15 - What helped her when babies were little: asking for help, planning ahead, pacing yourself. 37:15: How Julie copes with big emotions while parenting: Headspace app and Mindful Mamas app. 39:36 - Julie’s best advice for newly diagnosed patients - empower yourself and be a partner with your medical team.40:45 - Cheryl and Julie’s advice to patients who are overwhelmed when “doing their own research” - how to evaluate which resources are high quality information and which are low quality or dangerous. Reflections on how to navigate disease-specific Facebook groups.44:15: Julie’s concluding thoughts: if you are dealing with an autoimmune disease, you are not alone.
Seth Rotberg, Patient Recruitment Manager at WEGO Health & Co-Founder of Our Odyssey, shares his views on how to empower rare disease patients, improve clinical trials, and move towards a truly patient-centric practice. He also discusses how and why Pharma should leverage social media and patient “influencers” to reach more patients.Schedule a meeting with Natalie Yeadon: https://www.meetwithnatalie.comNatalie Yeadon LinkedIn: https://www.linkedin.com/in/natalieyeadon/Impetus Digital Website: https://www.impetusdigital.com/Impetus Digital LinkedIn: https://www.linkedin.com/company/impetus-digital/Impetus Digital Twitter: https://twitter.com/ImpetusadboardsImpetus YouTube: https://www.youtube.com/ImpetushealthcareSeth Rotberg: https://www.linkedin.com/in/sethrotberg/WEGO Health: https://www.wegohealth.com/Our Odyssey: http://www.ourodyssey.org/
Alexa Chronister is the founder and president of Fight Like A Warrior (FLAW). She created FLAW after creating the Cards For Warriors program (sending handmade cards of encouragement to chronic illness warriors across the globe, reminding them they are not alone) in 2016. With the goal of creating a community of empowerment and improving the lives of those with chronic health conditions, she developed FLAW as a way to cope with her own health challenges, while giving back to others (and won a WEGO Health award in 2019 to prove it!). In 2020, she received her bachelor's degree with honors distinction in public policy (with a minor in social entrepreneurship!) from the University of Delaware, and completed a thesis focused on health policy and disease advocacy among POTS patients. Never a shrinking violet, she also plans to attend law school and pursue a career in health policy. In response to the COVID-19 pandemic in 2020, Alexa was instrumental in launching FLAW’s #ProtectTheVulnerable campaign, in partnership with numerous patient advocacy platforms including Health Advocacy Summit (founded by former guest Sneha Dave!), Support Fibro (founded by former guest Melissa Talwar), and InvisiYouth (founded by former guest Dominique Viel), among others. Alexa has a passion for working with individuals and communities to advance policy, advocacy, and entrepreneurial efforts, particularly within healthcare, focused on improving access and reducing inequity. [A note that this episode was recorded a year ago, hence features some dated mentions of the #ProtectTheVulnerable campaign and Alexa’s recent college graduation!] Tune in as Alexa shares: how she was diagnosed with hypermobility syndrome in childhood and, later, Ehlers-Danlos and POTS (postural orthostatic tachycardia syndrome) how she has learned to step up into the advocacy space how she manages her health day-to-day why it’s so vital our various practitioners find ways to communicate to one another about our cases how access directly impacts healthcare outcomes and patient experiences what inspired her to start Cards for Warriors at the age of 18, and how it laid the groundwork for what would become Fight Like A Warrior why it’s so important to listen to our bodies, especially as Spoonies the importance of self-advocacy what the future holds for FLAW
Cathy Chester is a certified health advocate, speaker, consultant, and patient leader for the multiple sclerosis community. She has been living with MS since 1986 and advocating since her diagnosis (before the internet or any FDA approved medications!) She has an award-winning blog, AnEmpoweredSpirit.com, and her work has appeared on various MS and health-related websites that include The Huffington Post, Everyday Health, Erma Bombeck's Writers' Workshop, The Mighty, BlogHer, and others. I've been interviewed by Katie Couric, Harvard Radio, Women's Day Magazine, Health.com, and other television and radio outlets. She's been profiled in many of the major MS magazines and received the Thumbs Up Award from the International Organization of Multiple Sclerosis Nurses for advocating and promoting nurses. She recently won the prestigious Lifetime Achievement Award from WEGO Health.Learn more about Cathy at AnEmpoweredSpirit.com.Thank you so much for tuning in!If you are looking for solutions that will allow you to break free from negative thought patterns, worrying, and the uncomfortable symptoms that are caused by anxiety check out Jennifer's website at www.jenniferbronsnick.com or join the Anxiety-Proof Her Facebook Community HERE: https://www.facebook.com/groups/anxietyproofher
So we skipped a week again. Because of being lazy or depressed - or a mix of both. What came first? So many things to think about in the wide and vast bipolar world. So what is actually bipolar disorder? Is it really a disorder or just a symtom of something bigger and unknown? Something about our ability to live and love together as the human tribe we should have been? Sow we got in touch with Bipolar Bandit - a friendly person who actually is diagnosed with bipolar disorder. Still - who have the right to tell us what we are and define us as humans? Here in her own words: My experience as having bipolar disorder is not only to educate, inspire, encourage ppl with mental illness, but also share tips on how to advocate and post blogs containing correspondence I have had with politicians and media. I have heard back from many including governors declaring mental illness awareness week in their states and personalized letter from President Clinton for my efforts. I founded Mental Health Advocates United and FB group Advocates for People with Mental Illnesses. https://mhadvocatesunited.wordpress.com I know many very influential mental health advocates and have interviewed Natasha Tracy and DJ Jaffe on my blog. I have made top lists for mental health bloggers several places including Healthline in 2016 and 2017. I am a contributor at The Mighty and a patient leader at Wego Health. I have been local advocacy mental health boards and had letters to editor published. I also ran a free event to raise awareness of mental health and make ppl aware of resources. NAMI, DBSA, BringChange2Mind, Mental Health America, and more were represented and our guest speakers were representative from governor's office and veteran from Wounded Warrior Project. https://embracelifeday.wordpress.com I am on almost all social media sites for Bipolar Bandit and Mental Health Advocates United. Come and take a look! https://bipolarbandit.wordpress.com Twitter @Bipolar_Bandit All spiked up with some bad sound and good life philosophies that could save lives or make us all go even more mad. Music: Ranch House - Bipolar Vortex The Womb - Another Disco Suicide Kathleen Martin - Bipolar Vortex Boogie (Drrrama!) Sigmund Droid - Suicide Do you wish us to stay sane in the Bipolar Circle? Please keep us alive and help us with some small change for a Coffee - and keep Bipolar Circle & The Birthday Show - commercial free! The future of entertainment is independent. So please support what you like. Visit our "Ko-Fi" collection website for one time support. https://ko-fi.com/bipolarcircle Or become a monthly Patreon supporter and receive more "hidden" weekly material - only for our steady supporters. Talk to us live - and join our "only for members" gameshows. https://www.patreon.com/bipolarcircle You can also give us some sexy comments - to keep us inspired!
Luke Escombe is an award-winning singer-songwriter, musician, and comedian who has turned his 25 years of living with chronic illness into inspiration for his art. Growing up in London, with a Rock and Roll Dad who worked in the music business, Luke's dreams of rock stardom suffered a serious blow at the age of 14 when he was diagnosed with Crohn's Disease. After spending long stretches of his 20's either housebound or heavily medicated, Luke finally launched his first album as a singer-songwriter at the age of 30, only to end up in hospital again a few months later, requiring blood transfusions to live through the night. His life since that time has been a remarkable transformation, driven by a change in values and a fundamental resetting of his relationship with himself, his creativity, and his art. Luke's breakthrough as a writer/performer came in 2011 with his one-man show “Chronic”, which combined multiple music styles with candid stand-up comedy about his many hospital stays. It was Luke's ticket to festivals all over Australia, and the start of his unexpected journey into health advocacy. The follow-up to “Chronic” was a kids band called “The Vegetable Plot”, which played its first show at the 2014 Sydney Fringe. After years of speaking about illness, The Vegetable Plot was Luke's way of making a fresh start: writing songs and playing music for kids, families, and foodies with an emphasis on having fun and being healthy. The Vegetable Plot won the award for Best Kid's show at the Fringe and has since played at major events all over Australia, including The National Folk Festival, Woodford, Sydney Festival and Splendour in the Grass. The band signed a deal with ABC Kids in 2019 and received an ARIA nomination in 2020 for their most recent album, Season Two. Luke is an ambassador for Crohn's and Colitis Australia and The Gut Foundation, a member of the NSW Arts Advisory Panel and a teaching artist with the Sydney Opera House's Creative Leadership in Learning Program. He has spoken three times at Parliament House in Canberra, as well as at the New Zealand National Museum in Wellington, the National Medicines Symposium, the Patient Experience Symposium, and at conferences, workshops, support groups, award ceremonies and training seminars across the country. 2017 saw him crossing the Pacific for the first time, telling his story at events in Chicago and Miami for Johnson & Johnson. His work was recognised at the end of the year by WEGO Health, who named him as the winner of their “Hilarious Patient Leader” award. Since then, Luke has received standing ovations on four continents for his unique mix of storytelling, music, humour and insight into the patient experience. In 2019 he collaborated with Crohn's and Colitis Australia to launch the podcast series The Bottom End, and followed that up at the end of 2020 with a new podcast - “Chronic” - made in collaboration with the US-based Gali Health app. Luke was once described by John Shand in the Sydney Morning Herald as a “rock-soul singer, raconteur, blistering blues guitarist, comedian and songwriter...and very good at them all”, and is most often described by himself as the Mick Jagger of inflammatory bowel disease. He is also the ever-so-exceedingly humble owner of "Sydney's sexiest man voice", a title he scooped in a phone poll on a popular radio station. Luke lives on Sydney's northern beaches with his wife and son. LINKS Watch Luke's “Master Key” comedy-music video about living with IBD: https://www.youtube.com/watch?v=sDBjI_Rqqm4 Luke's website: https://www.lukeescombe.com/ The Vegetable Plot website: https://www.thevegetableplot.com.au/ Luke's “Chronic” Podcast: https://soundcloud.com/luke-escombe/sets/chronic-podcast
On todays show, Stacy is back and we are talking with Julie Croner, Vice President of Patient leader network, blogger and health coach about being your own health advocate and giving voice to your healthcare relationship.Julie Croner is a Patient Empowerer, American Association of Drugless Practitioners Certified Holistic Health Coach, Yoga Instructor, Speaker and Patient Leader Blogger thriving with psoriatic arthritis and avascular necrosis of the femur and has battled melanoma, complex regional pain syndrome, depression, and anxiety. Using her personal mantra ‘It’s just a bad day, not a bad life’, she started itsjustabadday.com, which has been named one of the top 5 Psoriatic Arthritis blogs by EveryDay Health, top 7 Psoriasis blogs by HealthLine, top 40 Arthritis blogs by Feedspot and has been highlighted by The Mighty, WedMD, The National Psoriasis Foundation, and many other online sources. Staying busy is a way of life for Julie. Some of her accomplishments and activities include: Vice President of the Patient Leader Network for WEGO Health, 2016 Standford MedX Ignite Talk and Oral Presenter, 2014 Stanford Medicine X ePatient Scholar, Psocial Ambassador for the National Psoriasis Foundation, member of the Advocacy and Mission Committee for Arthritis Foundation, WEGO Health Best In Show: Twitter in the 2015 Health Activist Awards, Psoriasis Social Media Ambassador and Health Guide for HealthCentral, blogger for PsoStrong.com, contributor to Everyday Health and Yoga Instructor. Julie is an army wife and new mama. When she’s not working, Julie can be found jamming out to Celine Dion, taking a yoga class, traveling, cooking, geeking out over health-related things or enjoying life in Pittsburgh, PA. Thank you Julie for your passion and support!You can follow Julie at:Blog: itsjustabadday.comTwitter: twitter.com/justagoodlifeFacebook: facebook.com/itsjustabaddaynotlifeInstagram: instagram.com/itsjustabaddaynotlife LinkedIn: www.linkedin.com/in/juliecerroneBlog Email: justabaddaynotlife@gmail.comFind Davis and Stacy at:Website: www.diabeticsavvy.comYoutube: @diabeticsavvywithdavisknightFacebook: @diabeticsavvyInstagram: @diabeticsavvyTwitter: @diabeticsavvy Stacy on Twitter: @diet_bites
When the phrase "chronic illness" is mentioned, what typically comes to mind for most people is likely cancer, heart disease or diabetes. However, there's another chronic illness that affects an estimated nearly 1 million people in the United States and over 2.3 million people worldwide*: Multiple Sclerosis. As "Midlife-A-Go-Go the podcast!" embarks on Season 6, I'm happy you could join me and my special guest on the show, Cathy Chester. In 1986, Cathy was diagnosed with multiple sclerosis. Since that time she has become a tireless advocate to raise awareness about the disease. She's on a mission to educate, empower and inspire those afflicted with MS to live full, rich lives. Cathy is the recipient of a Lifetime Achievement Award from WEGO Health, she was named one of the “Top 10 Social HealthMakers in Multiple Sclerosis” by Dr. Mehmet Oz’s platform, ShareCare, and the accolades and awards go on. Cathy shares her MS journey, and I talk about my recent diagnosis of Secondary Progressive Multiple Sclerosis. ________________________ Visit Midlife-A-Go-GoMidlife-A-Go-Go on Facebook Midlife-A-Go-Go on Instagram Midlife-A-Go-Go on Twitter
Britt Clark is a patient advocate and the founder of Lupus Lyfe, a blog about living with lupus. She is also a lupus patient leader for WEGO Health and actively participates in discussions and panels advocating for chronic illness warriors. She has battled lupus, fibromyalgia, trigeminal neuralgia and recently stage 1 kidney cancer. In her spare time, she loves spending time with her husband and 2 sons and traveling. Blog: Lupus Lyfe www.lupuslyfe.com IG: @lupuslyfe FB: @lupuslyfe
This week join your patient host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, for a special AiArthritis Watch Party for the announcement of the winners of the 9th Annual WEGO Health Awards. The WEGO Health Awards were created to embody the mission of WEGO Health: to empower patient leaders by recognizing their contributions to the field of healthcare. There are 16 categories of awards that this year included over 13000 nominees and 96 finalists. AiArthritis is thrilled to announce that we won the 2020 WEGO Health Award for Best Team Performance! We are so grateful to all of our volunteers, staff, and supporters for making this award and all of our work possible. Our mission at AiArthritis is to center the patient voice in ongoing conversations about the issues facing the AiArthritis community and to bring as many voices to the table for those conversations as we can. Whether you have been with us from the beginning or are listening to AiArthritis Voices 360 for the first time, we want you to be a member of our family because only together can we move mountains and shape the future of AiArthritis patient health. 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 and all the other Voices 360 co-hosts to continue this conversation inside our new, 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. Show Notes: Episode 47 – “Teamwork makes the dreamwork: AiArthritis WINS Best Team Performance 2020” 00:53 - Tiffany welcomes listeners01:05 - AiArthritis was co-founded by Tiffany in 2011, after she started an awareness campaign to let people know that Arthritis is not just a disease for elderly people.02:59 - We are a family, and all of our volunteers are members of that family.04:03 - AiArthritis was 1 of 13000 nominations and 96 finalists for the WEGO Health Awards this year.05:40 - Hear the reaction when our volunteers found out we won the WEGO Health Award for Best Team Performance.14:51 - Tune in at AiArthritis.org/talkshow to listen to any of our previous episodes or subscribe wherever you listen to podcasts
On today's episode, Kelin and I share plenty of laughs -- and I put my foot in mouth as usual -- with cancer survivor Justin Birckbichler. Justin is a men’s health activist, testicular cancer survivor, and the founder of https://aballsysenseoftumor.com/ (aBallsySenseofTumor.com). In November 2016, he was diagnosed with stage II testicular cancer at the age of 25. Justin is known for his sense of humor. He is a frequent nominee and a past winner of WEGO Health's Hilarious Patient Leader award. Throughout his diagnosis, surgery, chemotherapy, and being cleared in remission in March 2017, he has been passionate about sharing his story to spread awareness about testicular cancer, promote open conversation about men’s health, and talk about the unspoken realities of being a cancer survivor. To learn more and get involved in the Man Up to Cancer movement, find us on social and visit us at https://my.captivate.fm/www.manuptocancer.com (www.manuptocancer.com). HOWL!! www.aballsysenseoftumor.com www.wegohealth.com/awards
Danielle was diagnosed with lupus 20 years ago. For years, she tried every holistic treatment she could get her hands on. She has never been on any medications and just did her best to get through the days for her family. She suffered silently. In August of 2017 she had the mother of all flares. She began to research, “Diet and Lupus.” She found the keto diet. In October of 2017 she made the lifestyle change to a ketogenic diet. Danielle removed all inflammatory foods from her diet and in a few weeks felt amazing and her energy level was through the roof. It is now over 2 years later and her lupus is in remission. Danielle has no symptoms and blood work shows no inflammatory markers. Her doctor cannot confirm or deny that this way of life has anything to do with her remission, but told her not to change a thing. She feels absolutely fabulous and is very healthy. Her cholesterol and blood pressure are perfect! What is most important is that she feels like she now functions like a normal person. Danielle is a Certified Health, Life and Keto Coach and also a YTT 200 Yoga Instructor. Danielle is also a patient leader at WEGO Health for the lupus community. She has a need, want, desire, whatever you want to call it to help people gain back control of their health and happiness. You can reach out to her on Instagram @ketolupie or on her website ketolupie.com
More About Natalie HaydenNatalie is a former TV news anchor and reporter living in the Midwest. Her mission in life is to be an advocate for those battling inflammatory bowel disease and to show that a chronic illness doesn't have to dull your sparkle. Natalie was diagnosed with Crohn's disease in July 2005, two months after graduating from college. After several hospitalizations, countless medications and flare ups, she underwent bowel resection surgery in August 2015.Along with her blog, Lights, Camera, Crohn's, Natalie is part of the Patient Advisory Board for IBD Social Circle (#IBDSC), a Patient Ambassador for Gali Health, a Patient Leader for WEGO Health, and a contributor to Everyday Health, Healthy Women, the IBD Healthline app, Mamas Facing Forward, and IBD Moms. She is also an active volunteer and spokesperson for the Crohn's and Colitis Foundation, specifically the Mid-America Chapter.Read more from Natalie in her blog Lights, Camera, Crohn's-----------------------StuffThatWorks is a crowdsource-based research platform empowering people with medical conditions to transform their experiences into an organized knowledge database aimed at figuring out which treatments work best and for whom.Learn more about StuffThatWorks.We're using crowdsourcing to gather data about chronic conditions and treatment effectiveness. Contribute to the Crohn's Disease communityMusic for The Patient Is In courtesy of Blue Dot Sessions.
On today's show, we welcome Julie Croner, Vice President of the Patient Leader Network at WEGO Health. Julie is a rare disease activist who has been educating and empowering patients for more than a decade with tools to better advocate for themselves and others. She and I met a while ago at one of those spectacularly stupid Pharma conferences where tokenism reigns supreme. These are the conferences where they ask patients to share their story FOR FREE—that's right, NO compensation for time or value, because that's their way. At the time, I was one of those suckers who did just that: Gave away the store that was my patient experience for free so the private sector could go off and make a fortune off the disenfranchised backs of patients. The upside? I got to meet Julie Croner. Julie knew better, so she went ahead and took up the charge at WEGO Health, which we'll learn about on the show. Tangential to this episode, you may want to consider scrolling back in my feed and checking out Episode 14 called "Pay Your Fucking Patients." You can tell this is a subject that really pisses me off, which is why – again – someone like Julie is the perfect person to chat with about all the things. Enjoy my talk with Julie Croner. WEGO Health: https://www.wegohealth.com. Episode 14: Pay the Patients!
Being diagnosed and living with multiple sclerosis is often overwhelming. Your MS journey might be challenging, frustrating and depressing at times. On the bright side, superb MS care is available. This podcast lays out ways that you can take charge of MS and get the care you deserve. Topics include finding the right neurologist for you and how to get reliable MS information. Improve your communication with your doctor regarding worsening symptoms, progressive disease, MRI imaging and medication risks. Making shared decisions regarding treatment with your neurologist highlighted. If you feel more comfortable sticking with the treatment plan called "adherence," you will be better off in keeping your MS in check. Financial assistance for treatments, MRI and office visits outlined. Expert information reviewed on diet, vitamin D, smoking, alcohol and exercise. Barry Singer MD, Director of The MS Center for Innovations in Care, interviews: Cathy Chester was diagnosed with multiple sclerosis in 1986 and has become a leading national MS patient advocate. Cathy is a graduate of Boston College with a Bachelor of Arts in English and Business and The Alfus Patient Advocate Certificate Program at The University of Miami. Cathy’s An Empowered Spirit was named Top Health Blog by Healthline and Top Multiple Sclerosis Blog by Healthline and WEGO Health for several years. Cathy is a regular contributor to MultipleSclerosis.net and Multiple Sclerosis News Today. Bhupendra Khatri MD is the founding medical director of the Regional MS Center of the Center for Neurological Disorders in Milwaukee, one of the largest multiple sclerosis centers in the U.S. Dr. Khatri completed his residency in neurology at the Medical College of Wisconsin and fellowship at University of California in San Francisco. He has been a principal investigator in numerous clinical trials, as well as an invited speaker at both national and international conferences. He has published over 55 papers in peer-reviewed journals and has contributed chapters to six books. In 2015 he was honored with the National Multiple Sclerosis Society Lifetime Achievement Award. He is an accomplished book author and published the award-winning bestselling book, “Healing the Soul, Unexpected Stories of Courage, Hope and the Power of Mind.” Visit mslivingwell.org for more information Share your MS story on ICanWithMS.org
WEGO Health is a mission-driven company connecting healthcare with the experience, skills, and insights of patient leaders. The organizations connect patient leaders within a vast network of healthcare companies in order to incorporate the patient perspective and expertise into every stage of the product life cycle. Kristen also talks about the 9th Annual #WEGOHealthAwards. What's the WEGO Health Awards? This prestigious award was created to recognize and honor patient leaders who make a difference in the health community. ⠀ Who should you nominate? Nominate the exceptional patient advocates, influencers, and organizations who make a difference in the lives of patients and caregivers. Nominate your favorite patient leader today! https://bit.ly/31ngdGG The #ThroughThePain Podcast was created to help individuals that suffer from Chronic pain to dare, dance, and dream #ThroughThePain. Join us in taking your power back and living your optimal life. --- Send in a voice message: https://anchor.fm/throughthepain/message Support this podcast: https://anchor.fm/throughthepain/support
Vamos falar sobre comportamento do paciente, o mercado de trabalho e tendências do consumo, três relatórios de empresas renomadas, Robert Half, Wego Health e Kantar. Além de você ouvir um resumo, disponibilizei no meu site os relatórios na íntegra para você baixar.Clique para Acessar os Relatórios ouhttp://www.paulocrepaldi.com/provocaccedilatildeo--inovaccedilatildeo-tomou/ep-19-trabalho-paciente-e-consumo.htmlTodas as segundas de manhã, Tomou?
Kristal Kent – Reclaim Your Life Even in Times of ChaosAired Friday, May 22, 2020 at 4:00 PM PST / 7:00 PM ESTPatient advocate Kristal Kent joins us to share how to reclaim the feeling of control over your life outcomes even in times of crisis and chaos. Often with a long-term medical condition, it's easy to feel as if you have lost control over your health, body, and life, including your rights. Regaining your sense of control by successfully advocating for yourself and others can give you back hope and self-esteem — two powerful factors in recovery. Kristal shares how to use patient advocacy skills in many areas of your life plus she shares:• The importance of self-advocacy and self-care, especially now,• Ways to build a community online and offline,• How to rewire your brain to focus on the positive regardless of what's going on around you• plus so much more…About our Guest:Kristal Kent is an Army Veteran, Fibromyalgia Advocate, Veteran Advocate, and Patient Leader Expert. With 20 years of Social Service experience, Kristal's advocacy work focuses on educating the Fibromyalgia Community on their illness, how to best advocate for their healthcare needs, and apply for Medical Disability Benefits. As a Veteran with Fibromyalgia, Kristal also advocates on behalf of Military Veterans diagnosed with PTSD, Traumatic Brain Injury, Chronic Pain Conditions, and Fibromyalgia. She works beside other Military Veterans and Veteran Organizations to bring about legislative changes at the VA. Her advocacy effort, for the Military Veteran Community and Fibromyalgia Community, has garnered several recognitions and awards. Kristal Kent is a member of “WEGO Health,” “Society for Participatory Medicine,” a Co-Op Member of the “Savvy Cooperation for Patients” and is a Board of Trustee Member for the “Fibromyalgia Care Society of America.” Kristal is the Founder of “The Fibromyalgia Pain Chronicles,” Founder of the “National Alliance of Fibromyalgia Advocates” and Co-Founder of “Veteran Voices For Fibromyalgia.”You can connect with Kristal and read about her Advocacy Initiatives on social media at https://www.facebook.com/FibroPainChronicles and https://www.facebook.com/VeteranVoicesForFibromyalgia/Listen to the empowering chat Friday, May 22 at 7 PM ET and later in podcast and videocast.The information provided on UnderstandingAutoimmune.com, Life InterruptedRadio.com, and The Autoimmune Hour is for educational purposes only.Visit the Autoimmune Hour show page https://omtimes.com/iom/shows/autoimmune-hour/Connect with Sharon Sayler at http://lifeinterruptedradio.com/#KristalKent #ReclaimLife #Health #TheAutoimmuneHour #SharonSayler
life outcomes even in times of crisis and chaos. Often with a long-term medical condition, it's easy to feel as if you have lost control over your health, body, and life, including your rights. Regaining your sense of control by successfully advocating for yourself and others can give you back hope and self-esteem — two powerful factors in recovery. Kristal shares how to use patient advocacy skills in many areas of your life plus she shares:• The importance of self-advocacy and self-care, especially now, • Ways to build a community online and offline, • How to rewire your brain to focus on the positive regardless of what's going on around youplus so much more...About our Guest: Kristal Kent is an Army Veteran, Fibromyalgia Advocate, Veteran Advocate, and Patient Leader Expert. With 20 years of Social Service experience, Kristal's advocacy work focuses on educating the Fibromyalgia Community on their illness, how to best advocate for their healthcare needs, and apply for Medical Disability Benefits. As a Veteran with Fibromyalgia, Kristal also advocates on behalf of Military Veterans diagnosed with PTSD, Traumatic Brain Injury, Chronic Pain Conditions, and Fibromyalgia. She works beside other Military Veterans and Veteran Organizations to bring about legislative changes at the VA. Her advocacy effort, for the Military Veteran Community and Fibromyalgia Community, has garnered several recognitions and awards. Kristal Kent is a member of “WEGO Health,” “Society for Participatory Medicine,” a Co-Op Member of the “Savvy Cooperation for Patients” and is a Board of Trustee Member for the “Fibromyalgia Care Society of America.” Kristal is the Founder of “The Fibromyalgia Pain Chronicles,” Founder of the “National Alliance of Fibromyalgia Advocates” and Co-Founder of “Veteran Voices For Fibromyalgia.” You can connect with Kristal and read about her Advocacy Initiatives on social media at https://www.facebook.com/FibroPainChronicles and https://www.facebook.com/VeteranVoicesForFibromyalgia/Listen to the empowering chat Friday, May 22 at 7 PM ET and later in podcast and videocast at www.UnderstandingAutoimmune.com/Advocate.The information provided on UnderstandingAutoimmune.com, Life InterruptedRadio.com, and The Autoimmune Hour is for educational purposes only.
Social media allows those living with medical conditions to share health anecdotes and advice to a wider audience, turning many patients into influencers within their condition's community. Healthcare companies, in turn, have increasingly tapped into these networks by partnering with influencers on campaigns. Julie Croner of WegoHealth, a patient influencer talent agency, joins us to discuss the ethical dilemma that advocates face when compensated. We revisit the credibility issues around influencers' sponsored content with journalist Suzanne Zuppello.
In this mini episode of the podcast recorded at HLTH in Las Vegas, Marc Iskowitz sits down with Wego Health's David Goldsmith, for his take on Facebook's just-launched tool for preventive health, untapped areas in mining the patient voice, and what he's gleaned over the first two days of the conference.
Ilana Jacqueline is a best-selling author, speaker, patient advocacy strategist, and professional patient advocate. While her background is in PR, her career as a patient advocate started with an early blog, Let’s Feel Better, in 2012, and gave birth to the book Surviving and Thriving with an Invisible Chronic Illness – which was Lauren’s playbook when she first got diagnosed (Ilana has a way of saying it like it is and managing to stay sane and amused that is right up Lauren’s alley). She has a longstanding relationship with Global Genes, where she served as the managing editor of The RARE Daily for five years. She was later appointed the Manager of Patient Advocacy at FDNA, where she developed the Genomics Collaborative program. Most recently, she has joined the boards of RUN (Rare and Undiagnosed Network), HAS (Health Advocacy Summit), and IDA (Invisible Disabilities Association), while also working at WEGO Health and continuing her regular column in IG Living. She has a long career of freelance writing, and has contributed to publications including The Huffington Post, Marie Claire, Everyday Health, Mashable, and The Miami Herald, among others. She speaks at medical, patient, and pharma conferences as well as consulting with companies on how the patient voice can improve the design of healthcare. Tune in as Ilana shares… - all about Surviving and Thriving with an Invisible Chronic Illness - about life with PIDD (Primary Immune Deficiency Disease) - that her family is more holistic when it comes to healing – but that holistic approaches haven’t been effective in managing all her symptoms - that she’s eager to try varied approaches to her healthcare - how difficult it was to be taken seriously by doctors - that she lives with constant gastrointestinal issues, nausea, etc. - what PIDD is: a lack of antibodies to prevent illness; and how to treat it: intravenous immunoglobulin therapy (IVIG) - that she is one of the very rare few living with PIDD who do not have a positive response to IVIG – so now, she treats infections as they come (high-dose/IV antibiotics, etc.) - that she has survived pneumonia, sepsis, and other serious conditions as a result of PIDD - that she is constantly proactive about her health, prevention, and care - how telecommuting has enabled her to have a career without endangering her body - the role that self-care and boundaries play in her life, both personally and professionally - confrontations with strangers – and the audacity of the uninformed - what it was like to have a visible element to her chronic illness (in the form of a central or PICC line) - the “rite of passage” of being judged for using the disabled spot in a parking lot – when you have a parking pass and live with disability, but look young and able - why she’s solution-focused and doesn’t wallow in sadness - her “curiosity cards” – business cards that called strangers out on staring, and provided answers through her blog - escaping uncomfortable situations without always engaging - why it’s not a disabled/chronically ill person’s responsibility to educate everyone – but why instructing the public on how to respond is useful - her co-morbidities, among them dysautonomia (the dysfunction of the autonomic nervous system) – and why hydration and fluids are so important to her health - how her mom has shown up as her advocate – and discovered her own diagnoses after Ilana did - how she’s learned to mitigate medical trauma - how her husband has taken on the role of advocate from the beginning of their relationship - what it’s like to be a patient advocate - her realizations about friendship with chronic illness – and that relationships are a two-way street - other chronic illness warriors she admires - how she was diagnosed with pelvic floor dysfunction - the thin line between empowerment and shame in the chronic illness world - the importance of finding a good therapist
I am honored to have been nominated by WEGO Health for the Best In Show Podcast award. The top three nominees in each category will be recognized this fall at the MGM Grand in Las Vegas. It would mean the world to me to get your endorsement (vote). Click on this link - https://awards.wegohealth.com/nominees/17191 to endorse (vote) me. Once on my page, scroll down and click on the "Endorse Lee Silverstein" button. Thank you!
You’ve heard from HealtheVoices advocates about their individual journeys. Now hear about the journey of HealtheVoices as a movement—how we got started and how we’ve grown, in celebration of five years of HealtheVoices. Featuring program sponsors and partners, alongside advocates who’ve helped to grow this community from its start, this is a look inside what makes HealtheVoices so special—the advocates themselves. Guests include past advisors, speakers and attendees, Brooke Abbott, Megan Starshak, AnnMarie Otis, Gabe Howard and Dawn Gibson, alongside Caroline Pavis of Janssen and Laurel Netolicky of WEGO Health.
Thousands of apps, devices, and wearables are brought to market with good intentions of solving real problems, but they just don’t get any adoption. Part of the problem is a disconnect between the innovation and the patient’s needs. What are patient leaders, and why is it so important for innovators to engage with them? How can involving a patient in the co-creation process help uncover hidden insights? What are some of the problems that can arise in these engagements? On this episode chief strategy officer of WegoHealth, David Goldsmith, and I dig into why product co-creation is so critical in order to successfully bring an innovation to market. 3 Things We Learned How patient leaders benefit your marketing Working with the patients helps get the word out about your product to other patients. The information will have a far greater impact with other patients coming from them than if that same message is being delivered by the company creating the innovation. How to get the most valuable contribution from patient leaders When it comes to patient leaders, most innovators don’t know where to find the right people to put into the room. They struggle to know who to draw in and what their contribution will be. Start with something along the lines of a patient advisory board. By creating a board that includes the very same people you want to reach, you boost the commercialization potential of your innovation. What can go wrong with patient leader engagements The one thing that many companies get wrong is engaging with patient leaders and then choosing to ignore or dismiss what was put forth. You could get backlash, and this might really affect your reputation in the market. The landscape of failed products and solutions targeting patients in healthcare is vast and highly documented. For a lot of innovators, the first mistake they make is in what they fail to do, and that’s bringing in the right voices and influencers from the market they are trying to serve. A lot of things get overlooked when you don’t involve the right stakeholders in your commercialization process. By choosing to co-create with the people your innovation is going to serve, you increase your chances of success significantly. Guest Bio- David is the Chief Strategy Officer at WEGO Health. WegoHealth is the world’s largest network of patient leaders to help health innovators access patient experiences and expertise in the designs, development, and promotion of products and services. Connect with him on LinkedIn https://www.linkedin.com/in/dsgoldsmith/.
Danny graciously put down one of his many "health hats" and came on the podcast to share his wisdom and deep knowledge of the inner workings of the medical industrial complex, aka healthcare system, from the many hats he's worn within the healthcare system across his lifetime. In turn, TSC management across a lifetime requires one to wear many "hats" as well. We discussed transitions and autonomy as it relates to moving from pediatric care to adult care in the medical/mental health/social services system. Like an elephant in the room, this man truly has seen the whole elephant. Danny took the time to talk to me about my experience with the many facets of TSC care over the last 22 years and validate the challenges, exclaim over the disconnects, yet also share how it's possible to find ways to work together. He has vast experience as a patient/caregiver, activist, writing, speaking, and advising people in their health journey. Danny is MPH, RN, CPHQ, a nationally recognized nurse leader and advocate for family caregivers and much more. His website is www.health-hats.com .
Danny graciously put down one of his many "health hats" and came on the podcast to share his wisdom and deep knowledge of the inner workings of the medical industrial complex, aka healthcare system, from the many hats he's worn within the healthcare system across his lifetime. In turn, TSC management across a lifetime requires one to wear many "hats" as well. We discussed transitions and autonomy as it relates to moving from pediatric care to adult care in the medical/mental health/social services system. Like an elephant in the room, this man truly has seen the whole elephant. Danny took the time to talk to me about my experience with the many facets of TSC care over the last 22 years and validate the challenges, exclaim over the disconnects, yet also share how it's possible to find ways to work together. He has vast experience as a patient/caregiver, activist, writing, speaking, and advising people in their health journey. Danny is MPH, RN, CPHQ, a nationally recognized nurse leader and advocate for family caregivers and much more. His website is www.health-hats.com .
Jack Barrette, the CEO and Founder of WEGO Health, talks about the evolution of social media and user-generated content, the importance of patient leaders becoming trusted voices, and the opportunity for digital health to pair empathy and information. Entrepreneurs: How to get investment from StartUp Health https://www.startuphealth.com/ Investors: How to invest in StartUp Health Moonshots http://www.healthmoonshots.com Want more content like this? You can subscribe to the podcast as well as other health innovation updates at startuphealth.com/content. Sign up for StartUp Health Insider™ to get funding insights, news, and special updates delivered to your inbox.
Amy Oestreicher shares an open and honest conversation about PTSD and living life with PTSD. She discusses the role of creativity in a way that is not often discussed. You’ll hear of some wonderful resources in books and more in this thoughtful and helpful discussion with host Mike Domitrz. Links to Amy's book are: https://www.amazon.com/My-Beautiful-Detour-Unthinkable-Grateful/dp/1733138811/ref=redir_mobile_desktop?_encoding=UTF8&ref_=dbs_a_w_dp_1733138811 And all ebook and paperback versions are available at https://www.amyoes.com/mbd * You are invited to join our community and conversations about each episode on FaceBook at https://www.facebook.com/MutuallyAmazingPodcast and join us on Twitter @CenterRespect or visit our website at http://www.MutuallyAmazingPodcast.com** BIO of Amy Oestreicher: Amy Oestreicher is an Audie Award-nominated PTSD peer-to-peer specialist, artist, author, writer for The Huffington Post, speaker for TEDx and RAINN, health advocate, award-winning actress, and playwright. As a survivor and “thriver” of multiple traumas, Amy eagerly shares the gifts of life’s “beautiful detours” her educational programming, writing, mixed media art, performance and inspirational speaking. Amy has headlined international conferences on leadership, entrepreneurship, women’s rights, mental health, disability, creativity, and domestic violence prevention. She is a SheSource Expert, a “Top Mental Health” writer for Medium, and a regular lifestyle, wellness, and arts contributor for over 70 notable online and print publications, and and her story has appeared on NBC’s TODAY, CBS, Cosmopolitan, Seventeen Magazine, Washington Post, Good Housekeeping, MSNBC, among others. To celebrate her own “beautiful detour”, Amy created the #LoveMyDetour campaign, to help others cope in the face of unexpected events. Her passion for inclusion, equity and amplifying marginalized voices has earned her various honors, including a scholarship from the Association for Applied and Therapeutic Humor Professionals, the first annual SHERocks Herstory National Performing Artist Honoree, a United Way Community Helper award, and a National Sexual Education Grant honor. To creatively engage student advocacy efforts, Amy developed a trauma-informed program combining mental health education, sexual assault prevention, and Broadway Theatre for college campuses, organizations and conferences. She has designed a creative curriculum for “Detourist Resiliency,” an outreach program taken to schools, hospitals, and at-risk youth. She also has launched Detourist peer-led chapters on college campuses, Detourist creative arts workshops, and an online community to creatively fight stigma in society through storytelling. “Detourism” is also the subject of her TEDx Talk and upcoming book, My Beautiful Detour, available December 2017. As the 2014 Eastern Regional Recipient of Convatec’s Great Comebacks Award and WEGO Health 2016 “Health Activist Hero” Finalist, and WeGO Health Expert, Amy is a passionate voice in the ostomy community, founding the online community Fearless Ostomates, speaking for National and Regional WOCN conferences, and writing for the official print publication of the UOAA. Her presentations on alternative medicine, and patient advocacy and healthcare have also been accepted to international conferences on patient care, internal medicine, medical trauma and therapeutic humor in hospitals. She has devised workshops for the Transformative Language Arts Network National Conference, the Eating Recovery Foundation, the 40th Anniversary New England Educational Opportunity Association Milestones Conference, the Annual National Mental Health America Conference,2016 American College of Surgeons Clinical Congress, and others. She was the 2016 keynote speaker for the Hawaii Pacific Rim International Conference on Diversity and Disability. and will be the featured keynote speaker at the 2018 International School of Social Work Conference in Ohio. As a playwright, Amy has received awards and accolades for engaging her audiences in dynamic conversation on trauma’s effects on society, including Women Around Town’s “Women to Celebrate” 2014, BroadwayWorld “Best Theatre Debut,” Bistro Awards “New York Top Pick, and the “Singular Award” at the Sarasolo Theatre Festival, presented annually for a “performance that is exceptionally uncommon, groundbreaking, original and inventive.” Amy has written, directed and starred in a one-woman musical about her life, Gutless & Grateful, touring theatres, schools, festivals, conventions and organizations since it’s 2012 New York debut. Gutless & Grateful is currently being licensed to students across the country for academic projects and competitions. Amy spent Fall of 2015 participating as a playwright and performance artist in the National Musical Theatre Institute at the world-renowned Eugene O’Neill Theater Center, where she helped to develop the full-length multimedia ensemble piece, The Greeks Are Trying to Tell Us Something, and was a writer, actress, composer and set designer for “Playwrights and Librettists” – a festival of 27 30-minute plays in five days. Her original, full-length drama, Imprints, exploring the physical and psychological impact of trauma, premiered at the Producer’s Club in 2016, and is currently in development for a full New York production as Flicker and a Firestarter. Her short plays have been published by the Eddy Theatre Company and finalists in Manhattan Repertory Theatre’s Short Play Festival, as well as NYC Playwright’s Women in the Age of Drumpf. Her theatre education essays and monologues have been published in Creative Pedagogy journals, as part of a theatre curriculum for high school students in the Philippines, and as a teaching artist, she is a strong advocate for arts integration and education. Amy’s collaboration with Beechwood Arts on the immersion salon, “Resilience and the Power of the Human Spirit”, has traveled around the world to health and arts facilities as a public installation, incorporating her monologues, art, writing and recipes to express the life-altering detours and ultimately the invaluable gifts of her resilient journey. Amy is also an active artist and teacher in the Jewish community, being honored by United Way in 2005 for her music programs at Hollander House, completing artist residencies at Art Kibbutz, and delivering “Hope, Resilience & Biblical Women” keynotes for synagogues and religious schools. After studying Theatre of the Oppressed in her studies at Hampshire College, she helped to train ACTSmart, a Playback Theatre troupe in Amherst, MA. She is also a passionate arts education advocate, a successful mixed media visual artist, a continuing education studio arts teacher, and an active member of the League of Professional Theatre Women, League for Advancement of New England Storytellers, Fairfield County Cultural Alliance, Alliance for Jewish Theatre, Theatre Artist Workshop, and several art guilds throughout Connecticut and New York. Amy is currently developing a multimedia performance project incorporate her original music compositions with the oral histories of her grandmother, a holocaust survivor with musical director David Brunetti, and developing a new multidisciplinary solo musical based on herthird TEDx Talk this year: healing from trauma through the archetypal hero’s journey. She is also working on a full-length play with music, LEFTOVERS with director and dramaturge Susan Einhorn, based on her life after the surgical ICU. She is leading mixed media creativity and solo performance workshops to promote creativity as a mindset, an essential survival skill. Amy also offers creative coaching and consulting services help others navigate their own “life detours,” and prides herself most on ending each night with a gratitude list. As the creator of Gutless & Grateful, her one-women autobiographical musical, Amy has toured theatres nationwide. She also premiered her drama, Imprints, at NYC Producers Club in May 2016, about how trauma affects the family as well as the victim. Her #LoveMyDetour campaign helps others cope with unexpected events. “Detourism” is also the subject of her upcoming TEDx talk and book My Beautiful Detour. LINKS: www.amyoes.com Amy's Social Media: Facebook page: https://www.facebook.com/amyoestr and facebook.com/lovemydetour Linkedin: linkedin.com/in/amyoes Or you can subscribe to G+: https://plus.google.com/u/0/106058010956085677457/posts Pinterest: https://www.pinterest.com/amyoes70/allspice-acrylics-a-celebration-of-life-and-beauti/ Youtube: https://www.youtube.com/user/AmyOes70 Tumblr: https://www.tumblr.com/blog/amyoes stumbleupon: http://www.stumbleupon.com/stumbler/amyoes700 Bloglovin: https://www.bloglovin.com/blogs/amyoes-14356407 Twitter: @amyoes Instagram: @amyoes70 Link to R.A.I.N.N. (Rape, Abuse, & Incest National Network) at www.rainn.org Books Amy Recommends: Amy’s Book: My Beautiful Detour New World Theatre’s “Solitary Voice: A Collection of Epic Monologues” Nevertheless She Persusted by Tanya Eby & 8 Others The Hero’s Journey by Joseph Campbell Waking the Tiger by Peter Levine and Ann Frederick The Courage to Heal by Laura Davis and Ellen Bass The Body Keeps the Score by Bessel Van der Kolk MD and Sean Pratt READ THE FULL TRANSCRIPTION of the EPISODE HERE (or download the pdf): **IMPORTANT: This podcast episode was transcribed by a 3rd party service and so errors can occur throughout the following pages: Mike: Welcome to the respect podcast. I'm your host, Mike Domitrz from mikespeaks.com, where we help organizations of all sizes, educational institutions, and the U.S. military create a culture of respect, and respect is exactly what we discuss on this show. So let's get started. This week's episode, we want to get right into it here 'cause you're going to be incredibly inspired by our guest's journey back to wholeness and reclaiming her voice using creativity as her lifeline. She gratefully discovered the upside of obstacles. Today Amy is a PTSD specialist, artist, author, Tedx, and Rain speaker, award-winning actress, a playwright, and mental health advocate. That is Amy Oestreicher. Thank you, Amy, so much for joining us. Amy: Thank you for having me. I'm excited to be here. Mike: Absolutely. And so we want to dive right into this. The show, obviously, is all about respect, but you bring a different perspective in that you talk about PTSD and trauma. And let's get right into that. So when people hear trauma and PTSD, what form, or does it matter, that you're referring to? Amy: Well, what I'm referring to is, there's trauma that comes from many setbacks and many unexpected twists and turns in my life that I didn't expect, that really didn't come to my realization until years and years later. So for PTSD, something can impact us that can completely change our lives overnight, and we might sit with that for a bit, and slowly we feel that something isn't right. I don't feel the same. And slowly those memories come to surface, and I found my way through piecing together those memories and finding healing through creativity. PTSD, for me, started, with being sexually abused by a teacher that I trusted. And an example of a symptom of PTSD is the freeze response, where you don't think anything has happened, and you kind of wake up and go about your life, and think everything's as you were, and suddenly something is off, disassociation, meaning the world is around you, and you're somewhere apart from it wondering what's going on. Amy: I did not say no or fight back, although my mind was clearly thinking those things, but I just froze. I saw myself as somewhere separate. And years later it would take a lot of work to kind of bring those memories to light and start to heal through remembering all of that. Mike: Well, one, I want to thank you for sharing your journey, your strength, your courage as a survivor. And I think this is an important topic because a lot of times when people hear freeze, they think that the natural human response is freeze or flight or fight. They tend to think, oh, most people flight or fight. They think that, and they forget that freeze is actually the most natural human reaction under stress in our DNA system as human beings, because back in the times of cave people, you did not fight the creature there was 20 times larger than you. Amy: Right, right. Mike: You either played dead, freeze, or you ran. Fight was the last thing you did. So a lot of times people hear it and they go, "Why didn't you fight?" Because it's the last innate response that the human body is likely to have because naturally it's to freeze or to run. And in certain situations, running's not an option. Child teacher, you can definitely feel like, I don't have that option. So to freeze is the natural thing to occur, and I think too often people don't realize that. Amy: Exactly. Mike: And so I think for anybody listening, thinking that, saying, "Well, why didn't the person fighter? Or what ..." Those are not innately in our DNA. So the body reacts under stress to its most innate natural things that it thinks it should do, that saved it over thousands of years of human being in existence. And that's what can happen in that moment. Is that true? Amy: It's true, and I love to bring up an amazing resource that I found that, that changed my perspective on the freeze response. It's called ... It's a book called Waking the Tiger by Peter Levine. And what caught me, and what you brought up is, Peter Levine spent a lot of time just studying animals in the wild, and he saw that a gazelle when it's kind of running free it ... And a predator attacks it, it just plays dead. And then once the attack is over, it will just get up and just run and run and run and discharge that natural energy and restore its homeostasis and be back to normal. And Peter Levine was like, "Well, why can't humans do that? Why did we get stuck in that?" And, well, we have a brain, and we think ourselves, we overthink ourselves, and we stay frozen in that nestle, that bunches of energy, when really we just need to discharge that energy like the gazelle that is running through the wild. And we need to find a healthy container to get that capsulated energy out and bring it to light. Amy: Eventually through talking about it and sharing it or whatever feels like a release to you, but he really, Peter Levine really took his cues from these animals in the wild that have this freeze response in them, and they know how to know from it. And I think the community really needs to understand what goes on in the freeze response to really support survivors and understand that this may be all tucked in and it needs to be brought to light. Mike: Yeah. And one of the problems that communities can put on survivors at times is trying to understand why the survivor did what they did, instead of not understanding, the issue is what the predator did, not with the survivor did or did not do. To focus on whether the survivor fought back or run is missing the point. It's all about what the predator did. Now we need to be supportive of the survivor so that they can, like you said, be able to live that life, to be able to live a full life. Amy: Right. Or, "Why didn't you tell someone right away?" Your words often come last. Again, It's that you think of a kaleidoscope of ... I am an artist, so I've been creatively ... colors coming together, red anxiety or anger or fear, and the person just does not have those words. I mean, it takes time. But the, I think the important first step is the community needs to be so informed of what the freeze response is and be there for their survivors and believe them. Mike: Yes, well that's essential. And it is interesting because, depending on where PTSD has been discussed, people treat it differently. Military PTSD tends to be treated differently than sexual violence PTSD that's a result of sexual violence, because the military, and I get to work with the military all over the world, we thankfully are grateful from our military. Not everybody is, but a lot of people are. So when they look at the military, they go, "There's a hero who is struggling with something that happened because they sacrificed for our country." And so therefore there's empathy, there's understanding for that person. Yet there's not always the same toward sexual violence survivors. They don't have that same. Why do you think that is? Amy: Well, you have to remember, too, that it took a long time for those stories to be told as well. My grandmother was a Holocaust survivor, and I think about how she coped just coming right out of the war before PTSD was even a word. I think for survivors of sexual violence the encouraging part is it now is becoming talked about much more than when it happened to me. And I say keep going with that. But there are more blurry lines with that, especially with what's shown to us on the media, with messages we've gotten from the past from culture and things like that. And now we're all trying to kind of make a new game plan. But it is kind of a fuzzy area because things that have seemed okay to other people in the past, well, now these survivors' stories are being told, and we see that, you know when this happened, this was not okay. Amy: So I think it's our job, to be honest, everyone's job to make those boundaries just as clear that, just as PTSD is an atrocity with certain communities, it is an atrocity with survivors of sexual violence. I'm also a survivor of PTSD from almost 30 surgeries from another unexpected medical-related crisis. And I dealt with the same thing, that once I was done with all my surgeries and stitched up and ready to go, doctors thought, well, the physical part of me was healed, so why couldn't I just move on to the rest of my life? Whenever we encounter any kind of change in our life, where our life seems to just twist overnight, we need that support from those around us to know that it's going to take time for us to process that change, and we need to talk about it. Mike: Yeah. And that's so important. And that goes into you ... In your work you talk about sharing your story and why somebody sharing their story's so important. Can you share for our listeners, our viewers, why that is such an important journey? Amy: Yes. I didn't realize how important it was. My situation was very atypical, I guess. I guess unexpected, like anyone else would, but I was 18, and just a blood clot on caused me to go into many, many surgeries that changed my life overnight. And because of medical circumstances, I was very isolated for almost a decade. And so I didn't really have many people to talk to. I had my doctors, and I had my loving parents, and that's all. But slowly I started to write a little bit, and again, another book that inspired me was Joseph Campbell learning about, uh, the archetypal hero's journey, and I actually found my way through this dark, unanticipated chapter in my life through tracing Joseph Campbell's steps to what makes a hero in society and how they have to go away for a while and then come back transformed. I mean, it's in every Pixar movie, the heroes or in your Star Wars. And so I kind of used that as my own map. And so slowly I was typing. PART 1 OF 3 ENDS [00:12:04] Amy: Use that as my own map, and so, slowly, I was typing and typing to kind of uncover what I had been through for myself. That was only a very initial step because this was still all me realizing these things for myself. Then, years later, I finally was able to share it through theater, which I had always loved doing as a kid and which I thought was going to be my life. I ended up making that story arc into a one-woman musical that I've been touring since 2012, but it's very funny. That was the first time I'd ever shared anything about what I had been through, and in the very first opening venue in New York, I said one line about the sexual abuse. And it was very difficult for me. I didn't know whether it fit in with everything else, and then, over the years, as I became more and more comfortable with that, talking about it, more people that came to see my show came up to me and said, you know, "Something similar had happened to me." And I'd started the conversation. Amy: And now, I've expanded on the show, where I do go into that a lot and the healing that came come from it and the community that can come, so, I guess, writing my show and performing it was an example, for me, of how just planting the seed of just starting your story and getting to share it and share it and talk to other people, it can make you move on or go to the next step that you need to go to. Mike: And you're a big advocate of using creativity in that process, as you've explained. Amy: Yeah. Mike: So, yeah, you created the show, a one-woman, one-person show, that really has a powerful impact. If somebody's listening, going, "I'm just not creative. I am not an artist. I am not a performer- Amy: No, no, no- Mike: -I get- Amy: -don't say that. Mike: I know. I know, but that's what people are going to thing, so- Amy: I know. Mike: -we need to address that. I think there's a misunderstanding what creativity means, so can you explain what we mean by "creativity" and why- Amy: Totally. Mike: -it's so important and can be such a great resource in the process? Amy: Yes. Creativity is really just a mindset. I couldn't talk for many months after my surgeries because I had all these things going on, tubes in and out of me, and then I couldn't talk at times where I felt too shocked at everything going around me to even say a word. And I missed singing, and I wanted to go back to that. But that's when I started ... I picked up a paint brush by accident in one of the hospitals, started just painting, but by creativity is really just a way to see things differently. So, it means just taking a walk outside, taking a breath, looking at the tree and finding grounding by a tree in a new way. It means cooking a recipe you've always loved. It means putting a little bit of that locked-up energy that you'll ... that passion that was always there before all this that can never be taken away by any kind of trauma. It just gets frozen like a gazelle. You're playing dead. Amy: Creativity is a way to unlock that clenched-up energy and just bring it forward, and don't worry about the final steps of "Well, how am I gonna tell about what happened to me?" Just focus on that, those uncomfortable feelings you might feel in the freeze response, which is the anxiety, the pain, the fear. Feel that energy and see if there's a color. Start with that and see it in the sky or something and really just ... I got to say one more time, before you start working about how we're gonna show it to the community, just focus on getting out that energy for yourself and seeing that you were in there all along. You just got bring it to life somehow. Mike: Yeah. And you can choose to never share it with the community. It could be your process for your own journey. Amy: Exactly. Mike: And that's what I love about how you're describing creativity. I have always remembered. I was speaking to a doctor, and I work with a doctor who's both general practitioner and also holistic, so both sides of the equation. Mike: And he was once saying to me, "Hey, Mike, on a scale of one to three in how you feel the world [inaudible 00:16:49] the world, you're a three, very high, like, off-the-charts three. You feel everything in the world, which means you're a high creative," and I jumped back and went "Whoa, whoa, whoa, whoa. I don't do art. I don't write music. I love to sing, but I'm horrible at it. Like, I do not have artistic traits." And he went, "What? You get on stage and you share with people your thoughts and ideas. That's a very creative process in how that works and how you put the thoughts together and how you connect, and you're a massive problem-solver. That's what you love to do." So, that's all creativity, so I think- Amy: Oh, yeah. Mike: -for people listening, pause and go, "Are you a problem-solver? Because if you are, that's a high-level form of creativity. You're trying to creatively come up with a solution when you're problem-solving." Amy: Exactly. Yeah. It just means taking an unexpected turn and saying, "All right. I'll go with it and see what happens." And we never know what's coming next, so if you have creativity, that is your best resource because then you can just say, "Okay, unexpected twist, I'm gonna just follow you and use my magic reassembling creativity problem-solving skills to figure out whatever comes next." Mike: Yeah. And it's very natural, as a Buddhist approach, that we let go of the outcome, right, that we be present in the journey, let go of the outcome because when you're outcome-focused, it actually kills your creativity because- Amy: And [inaudible 00:18:11] the outcome. Mike: -you're creating pressure. Right. You're saying there has to be this end result versus actually just being free to the possibilities. That's creativity. Amy: Exactly. Mike: It is freedom of possibility, so I love that conversation. Amy: Open mind. Mike: Yes. Yeah, exactly. How do you think we help society as a whole have a universal empathy when we can't relate to what somebody else has been through? Somebody hears that and goes, "Well, why didn't they do this?" Or "Why didn't they do that?" And what's happening is they're watching through their lenses. They're thinking through their lenses and thinking, "I would've done this. At least, I think I would've. So, how in the world did they do that?" How do we help people understand that empathy means, "I don't think about it how I would've done it. I think about what they must have been going through, and I will never- Amy: Right. Mike: -fully understand it 'cause I wasn't there, but at least I'm trying to be compassionate from that viewpoint?" Amy: Right. I mean, I come from an acting background, and the first thing I remember learning is awareness without judgment. We're aware of everyone else around us, of everything else around us, but we don't judge. But, with these circumstances, I think, honestly, having been through it and now supporting other survivors of violence, I really think we all need to up our game and, again, be educated on PTSD and the various responses that can only not ... not only affect the survivors themselves, but the people that care about them. It can affect other communities and things they're going through. I mean, trauma both a universal and historical and ... we'll keep going because life changes. So, I think we're all better off if we understand what can happen, and we're ... as humans, we're all always going to think, "Well, I would've done this," or "I would've said 'No,'" or "I would've ...." Amy: I think, again, we can have those thoughts, but at the end of the day, we really have to understand that this is trauma. And I want to be open to whatever this person is sharing with me or chooses to share. Mike: Yeah. Amy: It's having respect. Mike: That's just it. It's treating everybody with respect and dignity, and in the wake of sexual violence, sometimes there's destructive coping strategies that show themselves- Amy: Exactly. Mike: -for a survivor and that can amplify symptoms of PTSD. And you used the word "victimization." Couple things. Those listening, when we say "destructive," what do we mean by that 'cause they might understand what that means and how do you help somebody who's experiencing that? Amy: So, destructive coping mechanisms. I'm gonna go back to that energy that survivors feel that has not been discharged. When we carry a secret, [inaudible 00:21:14] are like poison. They burdensome. They weigh down, and so those can often be coped with in anything from drugs and alcohol to other symptoms to any other way that we can find to become numb, whether it's scrolling up and down on Facebook all day. It's any way that we are trying to ignore that energy and kind of just close off and not deal with those things, and it takes a lot of bravery and a lot of courage to really look at that energy for what it is and maybe even remember a bit of what happened and how you felt. But it's a very important part of the process because all those destructive coping mechanisms ... really, it's about energy. Think of that energy that the gazelle wishes they could be running off and around with. It's that energy we need to get out, that we feel like we have to close down. Mike: Well, and I want to step in there because I, in this line of work ... and I'm sure you run into the same thing. People come up to me and go, "I have someone close to me in my life who either I know or I highly suspect is a survivor of sexual violence, but they have not told anyone. And I can see the destructive coping strategies in their life. How do I help them?" And what happens when they ask that question is there's two approaches. There's the "How do I help them? How do I support them?" And there's the "How do I fix them?" Which are two very different approaches. Amy: Yeah. [inaudible 00:23:02] true. Mike: Help and support is what people need. Being fixed is never gonna work with a human being. You don't fix people. I've made that mistake of trying to be a fixer in my life over [inaudible 00:23:12]. There were times, where I looked back, when I was trying to fix the person versus be supportive of the person, so how do we, instead of trying to fix them, how do we provide support when it's ... they're not asking for it? They have not come forward. I mean, verbally, asking for it. They're not outwardly saying, "Will you support me? Will you help me?" They haven't even told anyone that they are struggling with this. How do you help and support that person? Amy: And, honestly, they're role is very, very different because I think it's human instinct to want to fix people. When we see people struggling, we want to reach out, and we want to help them so badly. Surprisingly, the best way to help and support is not such a hands-on, fixing approach as you might have wanted. It's to really just ... being there as- PART 2 OF 3 ENDS [00:24:04] Amy: It's really just being there as a listener, as a gentle, compassionate listener. And if you need to say, "I believe you" ... It's taking in the words they're saying or whatever they're giving you. Mike: Yeah, because they might not tell you. They might not be in a believe you moment, because they might not tell you. And that's why saying that I'm here for you. If anything ever has happened or ever does, that's the language we teach our audiences. If anybody ever has or does. That way you're opening the door to possibilities of what could've already happened or what could happen in the future. It's so important for the person to understand, I'm here for you. And then the tough part is, you have to be patient. Amy: Right. Mike: Because they may not want to tell you for ten years, and that's their journey. It's not your right to invade and change their journey on them. Or ever. Or maybe they want to tell you right then, but it's their journey which means you have to be patient and understand this isn't about me finding out, or me being told. It's about them and being present for them. Amy: Yeah. And for those of you that are listening going, "That's it?" I get it, it's so simple and it's so difficult to just leave it at that, just be there. But it's that support. I always go back to theater and military veterans that the Greek plays of Sophocles about war and all those things. Those were originally meant for veterans of the war to come in and share their story to the community to get that community compassion, to have people know what they were going through. And there are other rituals that we still do today like dancing and group singing and all those things that show that our need for community is so important. So, survivors of sexual violence, if you feel kind of that no one in the community understands you, please know that coming back to the community is just such an important part of healing, even if it's scary. And for those that see these people struggling, just welcome them in and don't ask questions, don't demand answers. Just, we need to stay welcome with open arms. Mike: I love that you pointed out "Don't ask questions." Because that sounds like you're prying and you're investigating, which can very quickly turn into ... whether intentional or not, unintended victim-blaming is what can happen there. Amy: Right. Mike: So just listening is so important. Now, a great resource out there that you speak for, you're a RAINN speaker, is RAINN. Which for anybody listening is Rape Abuse and Incest National Network, RAINN.org. They also have an eight hundred number on their website, and you can call them and it's actually 656-HOPE, I think, is the eight hundred number. But you can call, you can email, and they'll hook you up with resources locally that are confidential and twenty-four seven. They can tell you what those are, but they can also just start by being there for you. It's a great organization. What are some additional resources that you feel are vital for survivors to know if somebody's listening right now and is experiencing PTSD? Amy: Right. So, first of all, I can't say enough good things about RAINN. They will connect you to anything ... and anonymously. I know a lot of people who are worried about saying who they are or saying who they feel the perpetrator was. You don't have to worry about that. They will take you wherever you are right now. Some books that really helped me again were Waking the Tiger by Peter Levine. He started this whole kind of therapy with the body called somatic experiencing, which is all about using breath work to really feel your body again. And another book that helped me understand is called The Body Keeps the Score by Dr. Bessel Van Der Kolk. But in terms of online resources, PTSD.org, there are so many resources there. Mike: So you just said that's PTSD.org? Amy: Yes. Mike: Okay, I just want to make sure we have all that on our show notes, for anybody who's listening so they can find that there. Amy: Right. And again, any of these places will connect you to someone ... Oh, no, that's not even there anymore. Oh my God. I will have to send you a new link for that. I'm sorry about that. Mike: Which link are you referring to? Amy: I was actually referring to PTS- Mike: Oh, yes, you're right, I see that now. There's nothing there. So that's okay, we'll have the link to RAINN- Amy: I will get you- Mike: -and we'll have links to all the books you've brought up, we'll have that in the show notes. Let's get into some more books here that you recommend for people. One is your own, your book, My Beautiful Detour. Another one is New World Theater Solitary Voice: A collection of epic monologues. And then you have Nevertheless We Persisted by Tanya Eby and others. If you want to dive in, why those three books? Obviously we'll start with yours, My Beautiful Detour. Amy: That's on pre-order now, I'm very excited for that because it is the whole story of a long-winded detour and lots of PTSD, where I felt very isolated and felt like no one understands me, I can't reach out for help, who would get this? But then how all this creativity ... and I say "creativity" in this general term of a mindset, kind of figuring this out as I went along ... how that really helped me along my journey. And eventually how I was able to reach out. I talk about being a detourist, where you see a detour in the path and you find a little creativity and find your way through. So besides talking about my story and how I healed, I also have a lot of really good plans for when life crashes over night and you need to find a way out again. So, I hope it's helpful. Mike: Absolutely. Well, I appreciate that. It's in a pre-order so it's still on its way, but people can get it now, so as soon as it comes out. And then, New World Theater Solitary Voice: A collection of epic monologues. What about that one? Amy: Well, again, I listed these because, again, the monologue that I wrote for this is actually how I originally discovered I was sexually abused, by picking up a book on a bookshelf, which is really the important resource that I wanted to bring up called The Courage to Heal, Laura Davis, and I'll have to ... The Courage to Heal really saved my life. It's a workbook for survivors of sexual violence and since then there have been editions for their caretakers to fill out with the survivors. There have been many recent versions, but I can't say enough about the book, The Courage to Heal. So, this book that just came out has a monologue where I talk about that first time that I take that up. Amy: And then this last, Nevertheless We Persisted, is actually a collection. It was nominated for an Audie Award this spring of monologues and stories about finding a voice in total darkness. So I hope those performances are very inspiring, as well. Mike: No, I appreciate that. And your book and your stories, you're getting the messages out there. Now, the one book that you just mentioned, The Courage to Heal, if somebody's looking for that, there's two different versions by completely different authors. There's How to Overcome Sexual Abuse and Childhood Trauma. There's also A Guide for Women Survivors of Child Sexual Abuse. Which one were you referencing? Amy: Right. So I was referencing the one that originally changed my life by Laura Davis and Ellen Bass. Mike: Got it, the Guide for Women Survivors of Child Sexual Abuse, okay. Amy: Right. Mike: Just so our listeners are hearing, I want to make sure we give them the right one. And we'll have that in the show notes, we're going to have all these in the show notes. Amy: Yes. Mike: So I want to thank you so much, Amy. Amy: Thank you. Mike: For everyone listening, this is Amy Oestriecher. Amy: Hi. Mike: Our show notes will have all of the links to Amy, 'cause she gave us a lot for social media. All these books, I'm going to have it all there so you can find it all there. Remember you can also jump in this discussion on Facebook, we have a discussion group called The RESPECT Podcast discussion group, jump in there on the conversation, subscribe on iTunes. We love it if you leave a review, too, that always helps. So, Amy, thank you so much for joining us. Amy: Thank you. Thank you. Mike: Thank you for joining us for this episode of The RESPECT Podcast, which was sponsored by The DATE SAFE Project at datesafeproject.org. And remember, you can always find me at mikespeaks.com. PART 3 OF 3 ENDS [00:33:25]
WEGO Health is on a mission-driven company connecting healthcare with the experience, skills, and insights of Patient Leaders. They are the world’s largest network of Patient Leaders, working across virtually all health conditions and topics. The WeGo Health network collaborates with startups, life sciences companies, non-profits, agencies, government and all types of organizations across health care. WEGO Health offers enterprise and on-demand solutions that allow organizations to leverage patient experience and expertise in the design, development and promotion of their products and services. CEO Jack Barrette is super passionate about the role social media plays in hacking healthcare to create a better future for patient treatment - which is an essential discussion in light of the recent #DeleteFacebook movement. People like Sophie Thacher, a software engineer with type 1 diabetes who hacked her continuous glucose monitor to get more actionable health data then the device allows with its standard interface. Or Dakota Rosenthal, Sophie Thachera 22-year-old with a rare form of hemophilia that prevents his blood from clotting properly. Dakota grew so frustrated with the poor usability of mobile apps for his condition he created a free one of his own, which is now used by thousands of fellow hemophiliacs to manage their health better.
As the value of the patient perspective gains greater recognition throughout the healthcare continuum, Wego Health is seeking to both tap and provide that perspective to guide a range of clients within the world of healthcare. The company has amassed a network of more than 100,000 people that includes patients, caregivers, thought leaders, and influencers. We spoke to Jack Barrette, founder and CEO of Wego, about the company, the changing role of patients, and how the patient voice is being harnessed to transform healthcare today.
Empowering patients to work alongside patient professionals or within side health care
In today’s episode of The Plant Trainers Podcast we talk about dystonia with Tom Seaman. Dystonia is a neurological movement disorder that many people, including ourselves, have not heard of before. We found it interesting to hear Tom talk about his journey that dystonia is taking him on. We believe his story is inspiring to all who find themselves living with chronic pain or who are unable to physically move through life the way they want to. His openness and honesty was raw and we really appreciate how he was able to talk about the emotional trauma that was paired with his physical challenges. I know that we have said this before, but this podcast must be shared with anyone who could benefit from getting just a glimpse of inspiration or hope because their story is similar to Tom’s. We hope that this podcast will make it into the hands of people who are living undiagnosed with dystonia and that they will be able to make massive changes and find better-coping skills to improve their quality of life. Tom Seaman is a chronic pain and dystonia awareness advocate, health blogger, motivational speaker, and author of the book, Diagnosis Dystonia: Navigating the Journey, a comprehensive resource for anyone living with any chronic condition or other life challenge. He is also a Certified Professional Life Coach in the area of health and wellness. Tom volunteers for the Dystonia Medical Research Foundation (DMRF) as a support group leader, for WEGO Health as a patient expert panelist, and is a member and writer for the Chronic Illness Bloggers Network. In this episode we discussed: What is dystonia? Is it idiopathic? Tom’s physical and emotional Journey Escaping the depression Overcoming the physical and mental challenges Depression Where Tom is now? Ideas for managing dystonia (stress, nutrition and exercise) What to expect when reading Tom’s book Actionable tips for people who think they may be living with dystonia Links to things we mentioned: Thank you to today’s sponsor –> – use “PlantTrainers” at checkout for 15% off Become one of our Patrons & Tom Seaman’s , , , , , by Tom Seaman Thank you to this month’s Patrons for supporting us on : “Joe” Millie Pearson Stu Dolnick Mary Lou Fusi Carmen Fanous Emily Iaconelli Spanish Armada Don’t forget to contact us at with your question for our Plant Trainers Facebook Lives! We hope you enjoyed this podcast! Please take a moment and – we would be grateful! This will help get our podcast out to others who may enjoy it. We promise to read your reviews and consider your feedback. This show is for you. Please subscribe to The Plant Trainers Podcast on , , or so you will know when we release a new episode. We’re also available to ! Help us by spreading the news about our totally awesome Podcast! Click for a list of our services
Sarah Kucharski returns to the podcast to talk about 280-character tweets, the importance of health literacy, changing the narrative of patient inclusion at WEGO Health, growing as a patient advocate in her work with End Well, and creating the Afternoon Nap Society. Follow Sarah on Twitter @afternoonnapper and afternoonnapsociety.com. Run Time - 1:03:23 Send your feedback to feedback@justtalkingpodcast.com.
BOOK: Thriving in the Workplace with Autoimmune Disease: Know Your Rights, Resolve Conflict, and Reduce Stress http://amzn.to/2hcIKqP 200 High Vibration Foods Shopping List: http://learntruehealth.com/vibelist Limited Number of FREE BOOKS! http://learntruehealth.com/vibe Free $69 value 3-video course on raising your vibration! http://learntruehealth.com/reboot Autoimmune Diseases http://learntruehealth.com/autoimmune-diseases/ Autoimmune Diseases: Thriving In The Workplace Autoimmune diseases are hard to detect, and some of them are incurable. Dealing with this health condition is a challenge in itself. Having to worry about how to survive in society such as the workplace is an even more significant obstacle to hurdle. My guest, Holly Bertone is no stranger to this situation. In fact, it empowered her to use her experience to help other people cope with autoimmune diseases. Transitioning Stage Holly Bertone has always been active during her teenage years and in her 20s. However, like many young people, she was a junkaholic who enjoyed sweets too much. Resolving to have a better lifestyle, Holly Bertone transitioned in her 30s and got into fitness. She was active in mountain bike races, swimming and running. Consequently, Holly Bertone’s diet improved. She still enjoyed sweets but consumed it in moderation. Diagnosed With Breast Cancer Thinking that her healthier lifestyle drove her further away from illnesses and diseases, Holly Bertone couldn’t be more wrong. On her 39th birthday, she got a gift she didn’t expect — breast cancer. Before the doctor breaking the news to her, Holly Bertone recalled that she initially felt a lump as she rolled in bed one morning. It took two months of tests before Holly Bertone’s doctor dropped the bomb. Life In Remission It’s hard when you find out you have cancer, but as the saying goes, ‘Life goes on.’ And that’s precisely what Holly Bertone did. Ten days after her cancer treatment ended, she got married. However, the ordeal wasn’t over. Even after cancer treatment, Holly Bertone wasn’t getting better. Some of Holly Bertone’s friends survived breast cancer and were running marathons, while Holly Bertone could barely get out of bed. “I picked an aggressive treatment. But in hindsight, I wish I looked for other treatments first, especially nutrition.” Diagnosed With Hashimoto’s Six years ago, Holly Bertone complained that she was still feeling sick all the time. Doctors initially did not take Holly Bertone seriously because this was a year after her successful cancer treatment ended. Hence, the testing dragged on and on until doctors found out Holly Bertone has Hashimoto’s disease. Hashimoto’s disease is an autoimmune thyroid condition. According to the Mayo Clinic, Hashimoto’s disease primarily affects middle-aged women. However, it can also occur in men and women of any age, and in children as well. Furthermore, it is the most common cause of hypothyroidism in the United States. Coping with Hashimoto’s Autoimmune diseases can’t be cured immediately, and it indeed can’t be cured overnight by taking a lot of drugs. Holly Bertone’s case was no exception. Everyday was a constant struggle. “I was still going to allopathic doctors at that time who told me I have a hypothyroid disease. Hence, I took a lot of medicines,” recalls Holly Bertone. “My health got worse. I had migraines, brain fog, cognition issues, joint pains and chronic fatigues for five years.” The Myers Way Discovering The Autoimmune Solution book by Dr. Amy Myers was Holly Bertone’s saving grace. The book expounds on the causes of autoimmune diseases and how to reverse it naturally through diet and lifestyle changes. A New York Times bestseller, Dr. Myers has helped thousands of people suffering from autoimmune diseases. The book provides a step-by-step process towards helping your body improve in a month. “I followed her ‘Myers Way’ autoimmune protocol. I cut gluten entirely, as well as processed foods and sugar. A week later, I got rid of dairy,” said Holly Bertone. “The more foods I started to eliminate and the cleaner I ate, my health improved.” Natural Living Holly Bertone’s battle with Hashimoto’s wasn’t limited to food. Bent on making her living environment as healthy as possible, she eventually got rid of all cleaning products that had harmful ingredients. Eventually developing her line of natural organic products for the home, Holly Bertone proudly only uses the best natural ingredients for her products. Her line has also expanded to making all-natural beauty products as well. “I first got rid of harmful cleaning products. Then I learned how to make my own non-toxic cleaning products and natural beauty products,” Holly Bertone said. “It was a month before I noticed significant changes.” My Mommy Has Cancer Book If cancer is hard for the person it was diagnosed with, it is hard for family members, too. Children are affected the most. Hence, this book was written to help both the parents and children process their feelings about the dreaded Big C. The book encourages parent and child to open the lines of communication about everything concerning cancer like chemotherapy, hair loss, surgery and much more. Each little topic has a break-out box that parents go over with their child to help them open up about how they feel. “My book is for elementary kids. My stepson helped me write it. He was seven years old when I was diagnosed with cancer,” said Holly Bertone. “He and another son of a survivor helped do the illustrations. It goes through the changes that a child sees when his parent has cancer.” Thriving In The Workplace If things in the homefront are challenging enough, Holly Bertone hurdled another situation at her workplace. Nowadays, it is hard to find companies who genuinely empathize with employees suffering from autoimmune diseases and other illnesses. You see, Holly Bertone worked for a federal government agency. For the past two years, Holly Bertone’s management has been very understanding, knowing she has Hashimoto’s disease and chronic fatigue. However, when the management changed, the new team was not accommodating at all. Consequently, Holly Bertone had to get a lot of paperwork to justify her disability. “Some laws covered my condition, but there was a lot of retributions against me. The new management was not happy that I was asking for minor accommodations regarding my health,” said Holly Bertone. One night, Holly Bertone was so sick, that she barely held it together. Her health was failing, and Holly Bertone’s doctor wanted her to get treatment. “I went to the doctor once, and the manager was not happy that I went to the appointment even if I had 480 hours of approved leaves legally covered. The top management rescinded it,” Holly Bertone recalls. After four to five months of declining health and stress, Holly Bertone made the difficult decision of resigning from her job that paid a hefty salary. However, treating her experience as a blessing in disguise, Holly Bertone decided to write a book to educate individuals with autoimmune diseases on their legal and disability rights in the workplace. “The Job Accommodation Network is a non-profit organization under the Department of Labor,” said Holly Bertone. “They can’t endorse my book, but they helped me gather info for accuracy. Their website also has a lot of good resources for people with disabilities.” Pink Fortitude Website Holly Bertone believes that the essence of everything that she writes about is taking whatever life hands her and making the world a better place because of it. Her yearning to help people is why she also put up her website called Pink Fortitude. Pink Fortitude aims to help people suffering from cancer and autoimmune diseases. The website promotes a healthy and natural lifestyle through food, cleaning products and much more. “I have faced death so many times. I don’t know when my last day is going to be. So I encourage people to strive to live life everyday with fortitude, regardless of what life hands you,” said Holly Bertone. Holly Bertone, CNHP, PMP, is a health entrepreneur, author, and advocate. She is the President and CEO of Pink Fortitude, LLC and runs the healthy living website pinkfortitude.com. Holly Bertone is a breast cancer and Hashimoto’s survivor and turned these two significant health challenges into a passion for helping others. She inspires others with her quick wit, brutal honesty, and simple ways to be healthy in real life. Holly Bertone is a Certified Natural Health Professional, a Certified Essential Oils Coach, and is enrolled in a Naturopathic Doctorate program. She holds a Master’s Degree from Johns Hopkins University, a Bachelor’s Degree from Elizabethtown College, and is a Project Management Professional (PMP). Her accolades include: 2016 Speaker at the Healing Hashimoto’s Summit 2015 Inspire Award from the Tigerlily Foundation 2015 Rookie of the Year Health Activist Finalist for WEGO Health 2014 Woman of the Year from the National Association for Professional Women Accepted into the National Cancer Survivor’s Day Speakers Bureau Ambassador for the Tigerlily Foundation and the National Breast Center Foundation Holly Bertone is passionate about reaching out to cancer and autoimmune survivors, and also volunteers for organizations supporting our military veterans. In her free time, she loves to garden and hit flea markets and yard sales. She is married to a retired Green Beret, is a stepmother, and lives in Alexandria, VA. Get Connected With Holly Bertone: Official Website Facebook Youtube Twitter Instagram  Pinterest Recommended Readings by Holly Bertone Urban Monk by Pedram Shoji Books by Holly Bertone Thriving In The Workplace The Links You Are Looking For: 200 High Vibration Foods Shopping List: http://learntruehealth.com/vibelist Limited Number of FREE BOOKS! http://learntruehealth.com/vibe Free $69 value 3-video course on raising your vibration! http://learntruehealth.com/reboot ------------------------------------------------------------------------------- Do you have a blood sugar issue? I can help you achieve healthy, normal and balanced blood sugar naturally! 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In this episode, we dive into patient expert collaboration with lifelong health marketer, serial entrepreneur, and internet pioneer Jack Barrette. Jack is the founder and CEO of WEGO Health, and he is a frequent public speaker, blogger, twitterer (@healthyjack) and author. Jack has been recognized as "One of the Most Inspiring People In The Industry" by PharmaVoice Magazine. Jack and I take on one of the big challenges facing innovators which is focused on these two key words: "Patient Centric". We talk about it all the time, and no one is going to argue that it's not a priority, but how do we actually do it? Some would say that you simply engage patients in your business challenges, but if you've ever tried that, you know it's harder than it sounds. But if patients are a part of the solution, how do businesses get patients involved in achieving business objectives? Jack has some ideas, and he shares his 7 secrets of successful patient expert collaboration. Take a listen, check out WEGO Health, and be sure to download his tips in the shownotes. Let us know about your experience in engaging patients in your business. Check out all the shownotes at https://digitalhealthtoday.com/42 Learn more about your ad choices. Visit megaphone.fm/adchoices
Welcome to Episode 24! This episode features Gabe Howard. Gabe is an award-winning writer, mental health activist, and sought-after speaker and educator. In 2003, he was formally diagnosed with bipolar and anxiety disorders after being committed to a psychiatric hospital. Gabe’s writing has appeared in numerous online publications, including HealthyPlace, bphope.com, Health Central, Elephant Journal, WEGO Health, and The Mighty. In addition to his online work, he has appeared in Bipolar Magazine, the Columbus Free Press, the Wall Street Journal, Columbus Dispatch, Columbus Monthly, NAMI Advocate, and multiple other newspapers. In addition to his column on Psych Central, Don’t Call Me Crazy, he is also an Associate Editor and can be heard weekly as the host of The Psych Central Show. Here are my favorite gems from this weeks episode: EVERYONE has mental health and we would do better to learn about it Mental illness can happen to anyone and is not a reflection of the value of a person People with mental illness can and do get better Start conversations about mental illness with compassion and curiosity Mental illness is deeper and more complex than the pop culture portrayal We can be guides to helping people understand mental illness/health Check me on Facebook! http://www.facebook.com/dontfreakoutpodcast Follow me on Instagram http://www.instagram.com/dontfreakoutpodcast Get my FREE guide for how to stop freaking out: http://www.dontfreakoutpodcast.com
On PopHealth Week with Fred Goldstein on Wednesday July 19th at 12PM PT/3PM ET our guest is Kym l. Martin. Her bio notes: Kym helps lead efforts to ensure the success of WEGO Health Experts, a digital platform designed to bring the gig economy to healthcare. The DIY, on-demand solution is a high-value, cost-effective solution for healthcare leaders to quickly identify and hire patient experts and influencers as freelance consultants. Diagnosed with Hodgkin's lymphoma, melanoma (2x!) and breast cancer, Kym leverages her 30+ years of cancer survivorship expertise, 20+ years of wellness practice and 20+ years of business development success to help lead WEGO Health. Kym is a nationally-recognized patient Expert, speaker and leader named as one of 15 Disruptive Women to Watch in 2015. Follow more information follow Kym on twitter via @kymlmartin, contact by email: kymm@wegohealth.com check out WEGO Health. For prior interviews with Kym, cllik here, here and our very first engagement with Kym via her husband Ross Martin, MD, check out Health Datapalooza IV: A Poignant Message from Kym Martin.
Wednesday July 19th at 12PM PT/3PM ET our guest is Kym l. Martin. Kym helps lead efforts to ensure the success ofWEGO Health Experts, a digital platform designed to bring the gig economy to healthcare. The DIY, on-demand solution is a high-value, cost-effective solution for healthcare leaders to quickly identify and hire patient experts and influencers as freelance consultants. Diagnosed with Hodgkin's lymphoma, melanoma (2x!) and breast cancer, Kym leverages her 30+ years of cancer survivorship expertise, 20+ years of wellness practice and 20+ years of business development success to help lead WEGO Health. Kym is a nationally-recognized patient Expert, speaker and leader named as one of 15 Disruptive Women to Watch in 2015. Follow more information follow Kym on twitter via @kymlmartin, contact by email: kymm@wegohealth.com check out WEGO Health. For prior interviews with Kym, cllik here, here and our very first engagement with Kym via her husband Ross Martin, MD, check out Health Datapalooza IV: A Poignant Message from Kym Martin.
Look out…up ahead…A DETOUR! This week, on Laughbox, I have the great pleasure of talking with Amy Oestreicher. She’s funny, she’s talented, and she knows about the detours in life. She shares her story and how she’s learned to shift mindset and be more resilient. I think you’ll enjoy the interview…she’s VERY high energy! A little more on Amy… Amy Oestreicher is a PTSD peer-to-peer specialist, artist, author, writer for The Huffington Post, speaker for TEDx and RAINN, health advocate, award-winning actress, and playwright. As a survivor and “thriver” of multiple traumas, Amy eagerly shares the gifts of life’s “beautiful detours” her educational programming, writing, mixed media art, performance and inspirational speaking. Amy has headlined international conferences on leadership, entrepreneurship, women’s rights, mental health, disability, creativity, and domestic violence prevention. She is a SheSource Expert, a “Top Mental Health” writer for Medium, and a regular lifestyle, wellness, and arts contributor for over 70 notable online and print publications, and her story has appeared on NBC’s TODAY, CBS, Cosmopolitan, Seventeen Magazine, Washington Post, Good Housekeeping, MSNBC, among others. To celebrate her own “beautiful detour”, Amy created the #LoveMyDetour campaign, to help others cope in the face of unexpected events. Her passion for inclusion, equity and amplifying marginalized voices has earned her various honors, including a scholarship from the Association for Applied and Therapeutic Humor Professionals, the first annual SHERocks Herstory National Performing Artist Honoree, a United Way Community Helper award, and a National Sexual Education Grant honor. To creatively engage student advocacy efforts, Amy developed a trauma-informed program combining mental health education, sexual assault prevention, and Broadway Theatre for college campuses, organizations and conferences. She has designed a creative curriculum for “Detourist Resiliency,” an outreach program taken to schools, hospitals, and at-risk youth. She also has launched Detourist peer-led chapters on college campuses, Detourist creative arts workshops, and an online community to creatively fight stigma in society through storytelling. “Detourism” is also the subject of her TEDx Talk and upcoming book, My Beautiful Detour, available December 2017. As the 2014 Eastern Regional Recipient of Convatec’s Great Comebacks Award and WEGO Health 2016 “Health Activist Hero” Finalist, and WeGO Health Expert, Amy is a passionate voice in the ostomy community, founding the online community Fearless Ostomates, speaking for National and Regional WOCN conferences, and writing for the official print publication of the UOAA. Her presentations on alternative medicine and patient advocacy and healthcare have also been accepted to international conferences on patient care, internal medicine, medical trauma and therapeutic humor in hospitals. She has devised workshops for the Transformative Language Arts Network National Conference, the Eating Recovery Foundation, the 40th Anniversary New England Educational Opportunity Association Milestones Conference, the Annual National Mental Health America Conference,2016 American College of Surgeons Clinical Congress, and others. She was the 2016 keynote speaker for the Hawaii Pacific Rim International Conference on Diversity and Disability. and will be the featured keynote speaker at the 2018 International School of Social Work Conference in Ohio. As a playwright, Amy has received awards and accolades for engaging her audiences in dynamic conversation on trauma’s effects on society, including Women Around Town’s “Women to Celebrate” 2014, BroadwayWorld “Best Theatre Debut,” Bistro Awards “New York Top Pick, and the “Singular Award” at the Sarasolo Theatre Festival, presented annually for a “performance that is exceptionally uncommon, groundbreaking, original and inventive.” Amy has written, directed and starred in a one-woman musical about her life, Gutless & Grateful, touring theatres, schools, festivals, conventions and organizations since it’s 2012 New York debut. Gutless & Grateful is currently being licensed to students across the country for academic projects and competitions. Amy spent Fall of 2015 participating as a playwright and performance artist in the National Musical Theatre Institute at the world-renowned Eugene O’Neill Theater Center, where she helped to develop the full-length multimedia ensemble piece, The Greeks Are Trying to Tell Us Something, and was a writer, actress, composer and set designer for “Playwrights and Librettists” – a festival of 27 30-minute plays in five days. Her original, full-length drama, Imprints, exploring the physical and psychological impact of trauma, premiered at the Producer’s Club in 2016, and is currently in development for a full New York production as Flicker and a Firestarter. Her short plays have been published by the Eddy Theatre Company and finalists in Manhattan Repertory Theatre’s Short Play Festival, as well as NYC Playwright’s Women in the Age of Trump. Her theatre education essays and monologues have been published in Creative Pedagogy journals, as part of a theatre curriculum for high school students in the Philippines, and as a teaching artist, she is a strong advocate for arts integration and education. Amy’s collaboration with Beechwood Arts on the immersion salon, “Resilience and the Power of the Human Spirit”, has traveled around the world to health and arts facilities as a public installation, incorporating her monologues, art, writing and recipes to express the life-altering detours and ultimately the invaluable gifts of her resilient journey. Amy is also an active artist and teacher in the Jewish community, being honored by United Way in 2005 for her music programs at Hollander House, completing artist residencies at Art Kibbutz, and delivering “Hope, Resilience & Biblical Women” keynotes for synagogues and religious schools. After studying Theatre of the Oppressed in her studies at Hampshire College, she helped to train ACTSmart, a Playback Theatre troupe in Amherst, MA. She is also a passionate arts education advocate, a successful mixed media visual artist, a continuing education studio arts teacher, and an active member of the League of Professional Theatre Women, League for Advancement of New England Storytellers, Fairfield County Cultural Alliance, Alliance for Jewish Theatre, Theatre Artist Workshop, and several art guilds throughout Connecticut and New York. Amy is currently developing a multimedia performance project incorporate her original music compositions with the oral histories of her grandmother, a holocaust survivor with musical director David Brunetti, and developing a new multidisciplinary solo musical based on er second TEDx Talk this year: healing from trauma through the archetypal hero’s journey. She is also working on a full-length play with music, LEFTOVERS with director and dramaturge Susan Einhorn, based on her life after the surgical ICU. She is leading mixed media creativity and solo performance workshops to promote creativity as a mindset, an essential survival skill. Amy also offers creative coaching and consulting services help others navigate their own “life detours,” and prides herself most on ending each night with a gratitude list.
MediStrategy with Kip Piper Episode 11: Improving Prenatal Care and Birth Outcomes Via Mobile Technology: Interview with Juan Pablo Segura of Babyscripts Summary What if we could eliminate preterm birth by 2027? There’s an app for that. That is the moonshot goal of Babyscripts, a new model in pregnancy management that seeks to improve prenatal care and birth outcomes by supporting both pregnant moms and their physicians. The app has been adopted by several of the nation’s top health systems, including MedStar Health, George Washington University Medical Faculty Associates, Northwestern Medicine, UT Physicians, and Aurora Health. A graduate of Notre Dame’s Mendoza College of Business, Juan Pablo Segura is the Co-founder and President of Babyscripts, the only doctor-delivered digital health tool that employs remote monitoring and big data to detect problems sooner. The innovative Babyscripts technology has been recognized by Startup Health as a ‘Healthcare Transformer’ and by CTIA as a ‘Wireless Lifechanger.’ The venture was also a member of the inaugural GE Consumer Healthcare program. Segura is a sought-after speaker on the future of digital health and consumer empowerment in the healthcare space; he has given presentations at mHealth, HIMSS, WEGO Health, Health Datapalooza, and Health 2.0. Today Segura discusses how the Babyscripts mobile app can improve birth outcomes, more rapidly detect at-risk pregnancies, facilitate patient-doctor communication between office visits, improve patient satisfaction, increase reimbursement for obstetricians, and lower overall healthcare costs. Listen and learn how the Babyscripts team has ‘labored’ to create and test a groundbreaking, evidence-based mobile app available only through obstetricians. Subscribe in iTunes | Stitcher | SoundCloud | Libsyn | RSS Feed Topics Covered [2:25] The nuts and bolts of Babyscripts New model for managing pregnancy Employs remote monitoring and big data Detect problems faster Help obstetricians deliver better care and improve birth outcomes [4:38] How the Babyscripts app works for doctors and moms Pregnancy is, of course, not a ‘disease’ 60-70% of pregnancies are low-risk App functions to detect complications in a preventative manner [8:25] Segura’s motivation to focus on prenatal care His mother experienced two miscarriages, yet no explanation offered Fascinated by ‘internet of things’ and data Wants to rethink how pregnancy care is delivered [13:35] How Babyscripts is distinct from other pregnancy apps Only available through doctor (mobile prescription) Partnership with physician increases engagement Automation allows doctor access to data on blood pressure and weight [21:18] How Babyscripts functions App provides expectant mothers to-do list, with evidence-based tasks approved by their doctor Mommy Kit shipped to patient containing blood pressure cuff and weight scale Minimum of one reading per week sent to doctor Doctor are alerted to abnormalities in real time [28:16] The process of validating the ROI story Majority of doctors paid lump sum for prenatal care and delivery (regardless of number of visits) Data collected at home reduces 40-50% of visits to doctor’s office Frees up slots to maximize revenue and reduce costs Allows doctors to spend more time with patients with high-risk pregnancies [39:30] Why treating obstetrical care like a commodity does not produce optimal results System imposes one-size-fits-all model Money not spent in most beneficial way [44:52 ] The traction Babyscripts is gaining with health plans, state Medicaid programs, and leading health systems Used to providing reimbursement for scientifically validated methods Fond of innovation Babyscripts studies have proven increased compliance and patient satisfaction [58:39] Segura’s best advice for entrepreneurs in the healthcare tech space Give yourself five years to see meaningful traction and scalability Learn from what is working and replicate Adopt sincere humility and a willingness to learn from others Connect with Juan Pablo Segura of Babyscripts Babyscripts Website Twitter Connect with Kip Piper, Host of MediStrategy Website Twitter Piper Report Blog LinkedIn About MediStrategy and Kip Piper The MediStrategy podcast offers informative interviews with healthcare leaders and insights on hot business and policy issues in Medicare, Medicaid, and health reform. Health executives, policymakers, entrepreneurs, authors, and other influencers share challenges and opportunities in America’s rapidly changing $3.2 trillion health care system. MediStrategy is hosted by Kip Piper, a top expert on Medicaid, Medicare, and health reform. A prominent consultant, speaker, and author, Kip Piper advises health plans, state Medicaid agencies, hospitals and health systems, provider associations, life sciences companies, and investment firms. Subscribe in iTunes | Stitcher | SoundCloud | Libsyn | RSS Feed
Estimates are that in the next 12 months, 40% of the U.S. workforce will in some way be participating in the freelance economy. First AirBNB, then UBER…and quickly stepping up are Patient Influencers. WEGO Health is leading this effort, tapping into more than 1 million network participants; and more than 100,000 valuable, and well-connected patient influencers who have personal, healthcare, and social network experience with 150+ diseases. On this episode of Red Hot Healthcare, Steve interviews WEGO Health's Chief Strategy Officer David Goldsmith. He has been an instrumental part in the company's recent offering of a next-generation smart platform. In this podcast interview, Steve and David discuss: A CEO's vision of patient influencer value and contribution The power of WEGO's patient influencers to Big Pharma challenges An 'AHA' moment in filling multi-industry demand WEGO's new 'low-friction' patient expert platform The ability of so many individuals to give back and grow personal income
The WEGO Health Activist Awards Finale
The WEGO Health Activist Awards Finale
"Part II of Day 5 WEGO Health Activist Awards 2016"
The WEGO Health Activist Awards Finale
"Part I of Day 5 WEGO Health Activist Awards 2016"
"Part II of Day 5 WEGO Health Activist Awards 2016"
"Part I of Day 5 WEGO Health Activist Awards 2016"
"Part I of Day 5 WEGO Health Activist Awards 2016"
"Part II of Day 5 WEGO Health Activist Awards 2016"
Part I of Day 4 WEGO Health Activist Awards 2016
Part I of Day 4 WEGO Health Activist Awards 2016
Part I of Day 4 WEGO Health Activist Awards 2016
Featuring Day 2 of the WEGO Health Awards 2016
Featuring Day 2 of the WEGO Health Awards 2016
Featuring Day 2 of the WEGO Health Awards 2016
Transforming adversity into triumph with Holly Bertone. Holly Bertone, CNHP, PMP President and CEO of Pink Fortitude, LLC Holly Bertone, CNHP, PMP, is an author, blogger, healthy living advocate, and breast cancer and Hashimoto's survivor. She is the President and CEO of Pink Fortitude, LLC. Holly is a Certified Natural Health Professional and is enrolled in a Naturopathic Doctorate program. She holds a Masters Degree from Johns Hopkins University, a Bachelor's Degree from Elizabethtown College, and is a Project Management Professional (PMP). Her accolades include: 2016 Speaker at the Healing Hashimoto's Summit 2015 Inspire Award from the Tigerlily Foundation 2015 Rookie of the Year Health Activist Finalist for WEGO Health 2014 Woman of the Year from the National Association for Professional Women Accepted into the National Cancer Survivor's Day Speakers Bureau Ambassador for the Tigerlily Foundation and the National Breast Center Foundation Holly is passionate about reaching out to breast cancer survivors, and also volunteers for organizations supporting our military veterans. In her free time, she loves to garden, and hit flea markets and yard sales. Holly is married to a retired Green Beret, is a stepmother, and lives in Alexandria, VA. Contact: holly@pinkfortitude.com Web: https://pinkfortitude.com Facebook: https://www.facebook.com/coconutheadsurvivalguide Twitter: https://twitter.com/PinkFortitude Pinterest: https://www.pinterest.com/pinkfortitude/ Instagram: https://www.instagram.com/pinkfortitude/
Jack Barrette CEO (Chief Executive Officer) of WEGO Health was Interviewed Live on 640WGST Talk Radio Atlanta's Health Tech Talk Live Hosted by Ben Chodor -- January 31, 2015 ARCHIVE Interview Aired at 3:00pm ET / 12:00pm PT / 2:00pm CT on Health Tech Talk Live Radio Show, Hosted by Ben Chodor. Show Broadcasts weekly on Talk Radio 640 WGST Atlanta. Public Relations and Marketing by http://1800publicrelations.com ("1800pr"), The Leader in Performance based PR and Marketing Services. To inquire about being a guest on this show or others: Matthew Bird 1800 Public Relations ("1800pr") 917-409-8211 matt.bird@1800pr.com http://www.640wgst.com/main.html http://www.640wgst.com/articles/health-tech-talk-490191/health-tech-talk-13092706/ http://healthtechtalk.com/ Twitter: @1800pr
I am thrilled to interview Marie Ennis-O'Connor in this show.Marie is a breast cancer survivor. Marie shares her journey and what survivorship means to her. She shares her learnings and decisions she made as a cancer patient and young women. She highlights the impact of those decisions as part of managing her survivorship. So do join me for this important conversation. Young and Mature alike.Here is Marie's Bio Marie Ennis-O’Connor is a PR consultant with a passionate interest in healthcare social media. She is a board member and social media manager for Europa Donna Ireland - The Irish Breast Cancer Campaign, an advocacy group that is one of 46 EUROPA DONNA member countries across Europe. Marie is a regular contributor to Health Works Collective, partner of Doctors 2.0 & You. She is a featured blogger on Berci Mesko's Webicina, also a partner of Doctors 2.0 & You, and has been awarded a top blogger accolade by Empowered Doctor.com and most inspiring writer by WegoHealth. Most recently she won the best health and wellness award in the Irish Blog Awards for her blog Journeying Beyond Breast Cancer. Marie is co-founder of #BCCEU, Europe's first breast cancer social media chat, and a committee member of Health 2.0 Dublin.
I am thrilled to interview Marie Ennis-O'Connor in this show.Marie is a breast cancer survivor. Marie shares her journey and what survivorship means to her. She shares her learnings and decisions she made as a cancer patient and young women. She highlights the impact of those decisions as part of managing her survivorship. So do join me for this important conversation. Young and Mature alike.Here is Marie's Bio Marie Ennis-O’Connor is a PR consultant with a passionate interest in healthcare social media. She is a board member and social media manager for Europa Donna Ireland - The Irish Breast Cancer Campaign, an advocacy group that is one of 46 EUROPA DONNA member countries across Europe. Marie is a regular contributor to Health Works Collective, partner of Doctors 2.0 & You. She is a featured blogger on Berci Mesko's Webicina, also a partner of Doctors 2.0 & You, and has been awarded a top blogger accolade by Empowered Doctor.com and most inspiring writer by WegoHealth. Most recently she won the best health and wellness award in the Irish Blog Awards for her blog Journeying Beyond Breast Cancer. Marie is co-founder of #BCCEU, Europe's first breast cancer social media chat, and a committee member of Health 2.0 Dublin.
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