Group of autoimmune diseases resulting in abnormal growth of connective tissue
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44 episodes with Scleroderma
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2 episodes with Scleroderma
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In this episode, we dive into a fascinating and often overlooked aspect of rheumatology: complications from diabetes that can mimic rheumatic diseases. Dr. Schiopu kicks off the discussion by shedding light on Diabetic Myonecrosis, a painful muscle condition that can be easily mistaken for other rheumatic disorders. We then explore Scleroderma, a skin-thickening muscle disorder that resembles systemic sclerosis (SSC) but has distinct underlying mechanisms. Dr. Schiopu shares invaluable insights on how to approach complex rheumatology consults in the hospital, emphasizing the importance of thoughtful diagnostic reasoning. She also discusses why sometimes the best approach in medicine is to avoid unnecessary tests and treatments, prioritizing patient care and accuracy in diagnosis.
Today's guest is Rashmi Bhasin, a true scleroderma warrior. Like many women seeking a proper diagnosis, she was repeatedly told her symptoms were due to hormones or stress. As a result, it took four years to finally get the correct diagnosis. But rather than letting that struggle define her, she turned it into a force for good. Today, she leads Scleroderma India, advocating for others facing similar challenges. Tune in to hear her inspiring journey firsthand!
Today's guest is scleroderma warrior Emily Radican. Over the years, Emily has been diagnosed with a range of autoimmune diseases, and five years ago, Limited Scleroderma became part of her journey. Many of her health challenges have revolved around her gut, which inspired her to pursue a degree in nutrition. Now, she's working toward her Ph.D. in Nutritional Science and Food Chemistry. Join us as we dive into her story, her autoimmune journey, and her exciting plans for the future after graduation!
Today's guest is Melissa Marquis, who shares her incredible journey of perseverance and advocacy. It took 10 years for Melissa to receive a diagnosis of undifferentiated connective tissue disease—a condition where the immune system attacks connective tissues, but the symptoms and lab results don't fully align with any specific connective tissue disease. Three years later, she was diagnosed with limited cutaneous systemic sclerosis. After years of uncertainty and navigating frustrating symptoms, Melissa turned her experiences into a resource for others. She authored the book Invisible: A Nurse-Turned-Patient's Resource to Living Well with Autoimmune Disease to support those facing similar challenges in their quest for answers.
Let's discuss the importance of recognizing and treating acute medical conditions such as cellulitis, using a recent personal experience of treating a 14-year-old hockey player. Dr. Carol and Kim Pittis highlight the swift and effective medical response from UCSF Children's Hospital, emphasizing the combination of frequency-specific microcurrent (FSM) therapy with traditional medicine. The discussion includes the impact of stress on health, the importance of patient advocacy, and the nuances of treating various conditions with FSM. Scenarios involving burns, cysts, and nodules are also examined. 00:14 Personal Story: Daughter's Health Scare 02:29 Urgent Care and Hospital Experience 05:33 Reflecting on Medical Knowledge and FSM 14:28 Historical Medical Literature and Communication 22:39 FSM in Practice and Integration 27:11 Memorable Moments with Dr. Nenshi and Dr. Burke 28:14 Addressing EMF Sensitivity Concerns 32:43 Treating Burn Scars with FSM 39:46 Insights on Scleroderma and Raynaud's 41:53 Understanding COVID's Impact on Vascular Health 46:32 Addressing Pancreatic Cysts and Nodules 50:45 Holiday Wishes and Final Thoughts Starting Off: A Scare and Lessons Learned Kim Pittis had a health scare that involved her daughter and how a quick and determined response prevented a serious escalation. It highlights the importance of acting fast and relying on the expertise of healthcare professionals when things take an alarming turn. After tackling this ordeal, it was incredible to have the support of the community and to engage in discussions about the crucial role of modern medicine and shared knowledge in navigating health challenges. This experience reinforced the value of antibiotics and the essential partnership between various treatments. Exploring Deeper Health Discussions We deep dive into several health-related topics, bringing out detailed discussions about treating scars, both atrophic and keloid, and how frequency specific microcurrent can make a significant difference. Burn scars and the complexities they bring were discussed, illustrating effective techniques for enhancing mobility and comfort. We touched on the importance of understanding different treatment modalities, emphasizing the collaborative nature of various approaches. There was a genuine appreciation for the blend of new and traditional knowledge, recognizing the timeless wisdom contained in historical medical texts. Innovative Case Studies Here intriguing case studies, including treating cysts and the complexities of nodules. Through these discussions, the value of hypothesizing, asking the right questions, and exploring less obvious solutions became apparent. They reflected on fascinating insights into hormonal impacts, nutritional considerations, and the intriguing intersection of different treatment strategies. It's always about finding the right balance and combination that works best for each individual case. A Community of Continuous Learning One of the podcast's core messages is about the endless growth and learning that occur within our community. Whether discussing personal experiences, expert advice, or audience questions, there's a shared commitment to expanding our understanding and improving outcomes. The discussions also touched on the importance of staying informed about the latest research, attending symposiums, and the role of case reports in advancing collective knowledge. It's about learning from one another, challenging current frameworks, and exploring innovative treatments.
What an inspiring guest we have today! Allison Zhang's story is a testament to resilience and determination. Living 24 years with scleroderma is no small feat, and founding the first national scleroderma NGO in China shows her incredible dedication to helping others in similar situations.Through this conversation, we'll not only get a glimpse into her personal journey of managing scleroderma since childhood but also learn about her efforts to advocate for and empower the scleroderma community in China. Let's dive in and uncover how Allison has turned her challenges into a platform for change and hope!.
In this episode, we review the high-yield topic of Scleroderma from the MSK section. Follow Medbullets on social media: Facebook: www.facebook.com/medbullets Instagram: www.instagram.com/medbulletsofficial Twitter: www.twitter.com/medbullets
Rachel Lando is a teacher of movement and anatomy, specializing in Pilates, restorative yoga, and self-myofascial release. She is also a writer and the founder of Patient Care Movement, a fitness company that provides accessible movement education for those living with debilitating chronic illnesses. Rachel pursued and received advanced certifications in yoga and Comprehensive Pilates. In this episode we discuss Rachel's journey into movement, her battle against Scleroderma and what has driven her to succeed so far. You can find out more about Rachel at https://www.patientcaremovement.org Enjoy!! #whatdrivesyou
Listen as Elizabeth Kircher, DNP, and R. Hal Scofield, MD, discuss best practice approaches for the treatment of Sjögren's syndrome and what's on the horizon for future therapeutic options.Topics include:Challenges in Sjogren's Syndrome Diagnosis and Patient Understanding: Difficulties in explaining Sjogren's syndrome diagnosis to patients unfamiliar with it and challenges in addressing the disease's varied symptomsPatient Education and Communication: Strategies to prevent overwhelming patients during early visits and effective ways to address misconceptionsDiagnostic Challenges and Misunderstandings: Differences between clinical and research criteria for diagnosis and the importance of understanding eachUse of Ultrasound and Biopsy in Diagnosis: Benefits and limitations of ultrasound and biopsies in diagnosing Sjogren's syndromeMultidisciplinary Care Barriers: Challenges in coordinating care among specialists such as ophthalmologists, dentists, and rheumatologistsSymptomatic vs Disease-Modifying Treatments: Strategies for managing symptoms vs addressing the underlying disease with medicationsLong-term Medication and Risks: Considerations when prescribing long-term medications and immunosuppressive therapiesResearch and Emerging Therapies: Developments in Sjogren's syndrome research, including promising medications in clinical trialsGuideline Development and Patient Reassurance: The role of professional guidelines in shaping care and providing patients with reassurancePolypharmacy and Medication Reconciliation: The importance of pharmacist involvement in managing complex medication regimens for older patients Faculty:Elizabeth Kircher, DNPR. Hal Scofield, MDMember/Professor, Arthritis & Clinical ImmunologyOklahoma Medical Research FoundationProfessor, Department of Medicine, College of MedicineUniversity of Oklahoma Health Sciences CenterAssociate Chief of Staff for ResearchOklahoma City US Department of Veterans Affairs Medical CenterOklahoma City, OklahomaLink to full program:https://bit.ly/3YKpsOE
Your friendly host of this health talk show enjoys going on cruises. We are set to go on another cruise very soon. Vacationers embark on cruises to enjoy rest and relaxation, but many vessels that travel the world are hiding dirty secrets. The Center for Disease Control (CDC) has revealed the top 10 filthiest cruise ships of 2024 after health officials randomly inspected 114 different ships. [Disclosure on the dirties cruise ships will happen during ‘The Dr. Bob Martin Show'] Vitamin Deficiency Can Lead to Complicated Autoimmune Diseases Autoimmune disease is a condition in which the body's immune system mistakes its own healthy tissues as foreign and attacks them. Most autoimmune diseases cause inflammation that can affect many parts of the body. Common forms include Type 1 diabetes, Multiple Sclerosis, Lupus, Rheumatoid Arthritis, Scleroderma, and Sjögren's. Recent research published in Science Advances discovered a link between a vitamin deficiency and autoimmune diseases, highlighting the importance of adequate intake. (Tune into ‘The Dr. Bob Martin Show'] Health Alternative of the Week Health Outrage of the Week Product Recall of the Week Health Mystery of the Week
Episode 117: Melissa Marquis, MS, RN & Her Book, Invisible: A Nurse-Turned-Patient's Resource to Living Well with Autoimmune Disease ABOUT MELISSA Melissa Marquis is a nurse, author and emergency management specialist. She has decades of experience in both the nursing and emergency management/public health fields. Beginning in 2008, she began noticing seemingly random symptoms, out of character for her. She quickly began her quest for answers. Utilizing her medical experience and connections, she sought care with numerous specialists. After almost 13 years, 5 rheumatologists, and numerous tests and procedures later- it was confirmed her symptoms were largely related to systemic sclerosis (scleroderma). Since then, Melissa has been a passionate advocate for patients within the autoimmune disease community, specifically scleroderma. After recognizing the lack of information available for patients who undergo years of visits and tests with limited or no answers, Melissa curated a resource book to share her experiences and lessons learned in navigating this challenging spectrum of illnesses. In her debut as an author, Melissa presents Invisible: A Nurse-Turned-Patient's Resource to Living Well with Autoimmune Disease which provides a broad-brush stroke of education about, and living with, autoimmune disease. She wisely incorporates topics such as symptoms, testing, doctor's visits, and then shifts into her experiences as the patient. CONVERSATION HIGHLIGHTS Dealing with the predictably unpredictable. Understanding triggers and taking actions for readiness. Knowing what's coming but not really preparing yourself. Melissa's Super Powers: (1) Being a Good Listener & (2) Identifying What's Needed and Stepping In. Leadership and doing the hard things. You DO have something to say! How to be a good self-advocate. The importance of faith and God in Melissa's life and journey. "Your disease is not who you are at your core as a person." How our need for therapy evolves with our life's experiences. Knowing what the right mix of self-care looks like for you. The scariest thing to face in life. The MAIN QUESTION underlying my conversation with Melissa is, If you were to write a book, what would you write about and share with others of your own life and lessons? FIND MELISSA Website: westhartford.org/living_here/town_departments/health_district/index.php LinkedIn: linkedin.com/in/melissamarquis Buy The Book LinkedIn – Full Podcast Article: https://www.linkedin.com/pulse/episode-117-melissa-marquis-ms-rn-her-book-invisible-john-m--pb2ff/ CHAPTERS 00:00 - The Book Leads Podcast – Melissa Marquis 00:53 - Introduction & Bio 03:36 - How did your path into your career begin, and what did it look like up until now? 08:40 - Who are you today? Can you provide more information about your work? 11:25 - How Melissa prioritizes self-care when it comes to all her work vs. her living with Scleroderma. 15:43 - Where Melissa was in her career and life when she began noticing symptoms. 25:14 - The origins of who Melissa is as a caregiver in life. 27:12 - How does the work you're doing today reconcile to who you were as a child? 28:23 - What's your super power? 29:25 - What does leadership mean to you? 31:48 - Can you introduce us to the book we're discussing? 46:24 - Can you provide a general overview of the book? 01:07:12 - How have you evolved as a result of writing this book? 01:10:58 - What's next for your writing? 01:12:43- What book has inspired you? 01:14:19 - What are you up to these days? (A way for guests to share and market their projects and work.) This series has become my Masterclass In Humanity. I'd love for you to join me and see what you take away from these conversations. Learn more about The Book Leads and listen to past episodes: Watch on YouTube Listen on Spotify Listen on Apple Podcasts Read About The Book Leads – Blog Post For more great content, subscribe to my newsletter Last Week's Leadership Lessons, if you haven't already!
In the last episode, you heard Dr. Shah discuss autologous stem cell transplants. In today's episode, you'll meet Kim Rodning, the first non-trial recipient of an autologous stem cell transplant at Duke University. Like many scleroderma warriors, Kim remains positive and upbeat, even in the face of adversity. Her story is truly heartwarming.
Kerry discovered she wasn't well about 5 years ago and with many tests and doctors, she was diagnosed with an autoimmune disorder called scleroderma. She is positive about her prognosis and is doing everything she can to manage symptoms including massage therapy. She asked us to use our platform to spread awareness and help people to learn more about this condition. Listen to Kerry's story and what is and isn't helpful to those living with scleroderma. 2rmtsandamic.com
Maria Morias, a registered nurse from Canada, shares her journey of managing multiple autoimmune diseases, including her recent diagnosis of pulmonary arterial hypertension. Previously dealing with scleroderma, Raynaud's phenomenon, and a rare liver disease leading to a liver transplant, Maria's ongoing symptoms of shortness of breath were eventually linked to pulmonary hypertension. Her story reflects on the psychological impact of chronic illness and the empowerment gained from community support and self-advocacy. Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com @phacanada
Dr. Osman is a clinician scientist who is interested in better understanding the pathogenesis of systemic sclerosis. He also uses point-of-care vascular devices for risk stratifying patients with systemic autoimmune rheumatic diseases (SARDs).
Today's guest is Dr. Ankoor Shah. He is the Director of the Duke Scleroderma Clinic. In our episode today, we discuss his clinic and what it has to offer to scleroderma patients. We then dive into the main topic of our talk, stem cell transplant. I learned so much about what stem cell transplant involves and how it has helped the scleroderma community.
Episode SummarySheila Nevins, a prominent documentary filmmaker and best-selling author, discusses her experiences with her son's Tourette syndrome and speaks about the broader themes of aging, disability, and authenticity. Through personal stories and reflections, she sheds light on often misunderstood topics, emphasizing the importance of genuine representation over sensationalism. With humor and candor, Sheila shares her journey of seeking answers and navigating the complexities of life. Her commitment to storytelling is marked by a willingness to confront uncomfortable truths, making for a compelling and insightful conversation. Sheila shares a wealth of wisdom for us all.About Sheila NevinsSheila Nevins is an American television producer and former head of MTV Documentary Films division of MTV Entertainment Studios. Previously, Nevins was the President of HBO Documentary Films. She has produced over 1,000 documentary films for HBO and is one of the most influential people in documentary filmmaking. She has worked on productions that have been recognized with 35 News and Documentary Emmy Awards, 42 Peabody Awards, and 26 Academy Awards. Nevins has won 31 individual Primetime Emmy Awards, more than any other person. The film, I Have Tourette's but Tourette's Doen't Have Me, won an Emmy.Sheila's IMDB pageFrom This EpisodeTourette Association of AmericaWatch I Have Tourette's but Tourette's Doesn't Have MeYou Don't Look Your Age...and Other Fairy Tales (I recommend the audiobook!)National Institute of Mental HealthFive Things You May Not Know About Tourette Syndrome Find and Follow Carole and Wisdom Shared:https://www.caroleblueweiss.com/Subscribe to YouTube channelFollow and send a message on FacebookFollow and send a message on LinkedInFollow on InstagramFollow on TikTokFollow on ThreadsThe Wisdom Shared TeamAudio Engineering by Steve Heatherington of Good Podcasting WorksCo-Producer and Marketing Coordinator: Kayla NelsonProduction Assistant: Becki Leigh
Today's podcast is with Ezra Halsted who was diagnosed with scleroderma at the age of 16. It was very interesting to hear the perspective of someone who was diagnosed young and how that changed her youth.
To have your question featured in a future video, please email: questions@drmdc.health
The St. John's Morning Show from CBC Radio Nfld. and Labrador (Highlights)
Morning Show reporter Jessica Singer stopped by the Delta Hotel in downtown St. John's, where they're hosting a national conference that's connecting people living with scleroderma. She spoke with Jason Doucette and Jillian Penney-Turner. Jason is the president of Scleroderma Atlantic, and Jillian lives with scleroderma.
In this episode, we review the high-yield topic of Scleroderma from the Rheumatology section. Follow Medbullets on social media: Facebook: www.facebook.com/medbullets Instagram: www.instagram.com/medbulletsofficial Twitter: www.twitter.com/medbullets Linkedin: https://www.linkedin.com/company/medbullets
Murph caught up with more RAGBRAI LI riders to hear about their week biking across Iowa. This is the second episode in a series of great interviews with riders from all over the country. On this episode meet Randy, Sonya and Barb. Randy is from DC and called this year his Revenge Tour! Sonya is from Maxwell, IA who rode RAGBRAI for the 27th time!! This year her daughter joined her. And finally Barb from Des Moines is on to talk about her experience. Riders may have seen her and her team riding the route loaded down with tanks of oxygen. Barb uses oxygen due to the effects of Scleroderma and has an amazing story to share with us. https://ragbrai.com https://ragbrai.com/thegreatiowafallride/ Barb's YouTube Page: https://www.youtube.com/@sclerowhatadventures
In this episode of Take a Pain Check; Sharan Singh shares her journey of living with multiple chronic illnesses, including Lupus, Rheumatoid Arthritis, Scleroderma, and others. Sharan delves into her diagnosis story, detailing the symptoms that led her to seek help, her experiences with Western and regenerative medicine, and the impact these treatments have had on her quality of life. She also opens up about the challenges of maintaining relationships, navigating academics, and undergoing a hip replacement, while emphasizing the importance of mental health and lifestyle changes in managing chronic illness. Additionally, Sharan discusses her path to becoming a physician assistant and her advocacy work on TikTok, where she shares her story to educate and support others in the chronic illness community. Don't forget to like, comment, and subscribe for more episodes. Our socials: Website: https://www.takeapaincheck.com/ Instagram: / takeapaincheck_ Tiktok: https://www.tiktok.com/@takeapainchec... X: https://x.com/takeapaincheck?mx=2 Likedin: / take-a-pain-check Sharan's socials: Tik Tok - @sharan.s, Instagram - @ssharann_ Growing Pains, Copyright, 2018, Alessia Cara
Welcome back to Episode 25 and thank you to all our loyal listeners! Please share an episode with someone you know! Beth recently had the honor of speaking at the National Scleroderma Foundation Annual Conference, July 20-22 in Seattle, WA. Using her background as a Pediatrician, parent and person living with Scleroderma, she spoke to PARENTS of kids with Scleroderma at the "Kids Get Scleroderma Too" portion of the conference. She discussed the challenges navigating the healthcare system and how to advocate for your child and yourself when you have rare, complex, chronic disease. In this episode we use her experience as a springboard to discuss strategies applicable for ALL parents to apply to their own kids - think constipation, headaches, belly pain, etc. The healthcare system is complex, fragmented and confusing. It is important that parents feel empowered to share the responsibility of managing their child's care.
Today's guest is Ilaria Galetti, a scleroderma warrior for over 27 years and currently awaiting a lung transplant. Like many scleroderma warriors she is an advocate for the disease. Ilaria is the Vice President of the Federation of European Scleroderma Associations FESCA. Listen to hear about her journey and her advocacy work.
Kathryn “Cassie” Torok, MD, director of the Pediatric Scleroderma Clinic at UPMC Children's Hospital of Pittsburgh, is one of the few doctors in the nation that is considered an expert on pediatric scleroderma and patients will travel from other cities to meet with her. Learn about this uncommon condition and the clinical work and research coming from the Pediatric Scleroderma Clinic.
Today's guest is Jim Stempel. Jim has been a scleroderma warrior for almost 2 decades. For him scleroderma attacked his lungs, resulting in a lung transplant in 2018. He then decided to retire which led him to volunteer. Jim is doing wonderful advocacy for the scleroderma community. Listen to hear his journey and how is giving back.
Amy Gietzen, a patient diagnosed with systemic scleroderma, shares her journey and experiences living with the disease. She discusses her initial symptoms, the shock of the diagnosis, and the lack of information and resources available at the time. Despite facing numerous challenges, including pulmonary fibrosis and pulmonary arterial hypertension, Amy maintains a positive outlook and a determination to be an exception to the prognosis. She emphasizes the importance of education, self-advocacy, and being proactive in managing one's health. Learn even more about Nola and PAH at www.OutnumberPAH.com. #WorldSclerodermaDay #SclerodermaAwarenessMonth #SayScleroderma @srfcure @scleroderma Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com
About 500 people in Nova Scotia live with scleroderma, a rare auto-immune disorder that affects the skin and internal organs. Host Jeff Douglas is joined by Michelle Richard, who lives with the disease, and Jason Doucette, president of Scleroderma Atlantic, to talk about what supports are available for people living with the disease.
In this episode of #LabMedicineRounds, Justin Kreuter, M.D., interviews Ashima Makol, M.B.B.S., for National Scleroderma Awareness Month, including a discussion about lab medicine's important role in diagnosis. Timestamps:0:00 Intro0:53 Why is it important for healthcare professionals to be aware of scleroderma? 2:34 What are some important things for laboratory professionals to understand about scleroderma?6:22 Rule in/rule out this rare diagnosis and help you understand where it fits within the scleroderma spectrum.8:44 Is there something you would like to highlight about scleroderma?11:58 Therapeutic or prognostic role in testing for scleroderma?13:56 Can you give our audience a sense for how dynamic can this disease be?16:05 What's on the horizon for people diagnosed with scleroderma?18:21 Outro
Send us a Text Message.In this episode of The Autoimmune RESET, VJ delve's into the complexities of scleroderma, an autoimmune disease that affects the skin and connective tissues. VJ explores the different scleroderma types, focusing on CREST syndrome, a subtype of limited cutaneous systemic sclerosis. Discover the key symptoms, including calcinosis, Raynaud's phenomenon, oesophagal dysmotility, sclerodactyly, and telangiectasias, and learn how they distinguish CREST from the more severe diffuse cutaneous systemic sclerosis. VJ also discusses the role of specific antibodies in diagnosis and examines natural therapies that can help manage symptoms and improve quality of life. Tune in for an insightful discussion on navigating this challenging condition with knowledge and support.Thanks for listening! You can join The Autoimmune Forum on Facebook or find me on Instagram @theautoimmunitynutritionist.
Nola Martin shares her experience with pulmonary arterial hypertension (PAH). Nola describes the physical and mental challenges she faced, including fatigue, weight gain, and the need to ask for help. Nola emphasizes the importance of self-advocacy and fighting for one's own health. She recounts a situation where she had to push her doctor to listen to her concerns and change her medication. Despite the limitations, she has a better quality of life and encourages others to be their own advocates. Learn even more about Nola and PAH at www.OutnumberPAH.com. #SclerodermaAwarenessMonth #SayScleroderma @scleroderma @srfcure Learn more about pulmonary hypertension trials at www.phaware.global/clinicaltrials. Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware Share your story: info@phaware.com
Systemic Sclerosis (SSc) is a painful and debilitating disease that our patients suffer from. However, a newly published study has concluded that there are some self-management interventions patients can engage with that have shown to improve fatigue, particularly for those newly diagnosed with SSc. Today, we review the procedures, interventions, results and conclusions of this study, titled: Effects of a Resilience-Building Energy Management Program on Fatigue and Other Symptoms in Systemic Sclerosis: A Randomized Controlled Trial, along with two of its authors, Dr. Susan L Murphy and Ms. Mary Alore, and how your patients can benefit from its lessons.
Today's guest is Dr. Beth Vukin. Beth is a Scleroderma warrior and a pediatric doctor. Beth was diagnosed recently but has had signs for 3 years. We discuss how, even as a doctor, it is hard to diagnose Scleroderma.
Hi all. It is Beth here. I have Scleroderma, a rare autoimmune disease. I was diagnosed just 8 months ago in September 2023 after 3-5 years of trying to figure out all of my vague symptoms. I am the Master of Ceremonies for this event and I am inviting you to join me for the National Scleroderma 5k walk/run: "Stepping Out to Cure Scleroderma". It is on Saturday, June 8th, 2024 from 8-11 am at Liberty Park in Salt Lake City, Utah. I am using my voice as both a doctor and a patient to raise awareness of a bigger issue:Scleroderma is a rare autoimmune disease, but autoimmune diseases are COMMON. They are underrecognized. They difficult to diagnose and treat. Early recognition is key to preventing disability and unnecessary suffering.There are over 100 autoimmune diseases. Some autoimmune diseases are rare but there are a LOT of very common ones like Multiple Sclerosis, Rheumatoid Arthritis and Lupus. Even diseases that are not “known as” autoimmune disorders are autoimmune in nature —Type 1 diabetes, Celiac disease, Guillain Barre syndrome, Inflammatory bowel disease, Hashimoto's thyroiditis (the most COMMON cause of hypothyroidism). Taken altogether, 1 in 15 people has an autoimmune disease. Alone we are rare. Together, we are everywhere. Walks like this are meant to help people feel less alone by being surrounded by others who are like them. On June 8th, we walk to raise awareness and support for Scleroderma. AND every day, we can share our stories and support one another as an autoimmune community that includes over 50 million people in the United States. Please come walk/run with us if you or someone you know lives with an autoimmune disease.To register for the walk:1. Go to https://scleroderma.org/steppingout/2. Under “Upcoming 2024 Stepping out to Cure Scleroderma Walks”, select the “Rocky Mountain Chapter” 3. Click on Salt Lake City, June 8th, 20244. Please join MY TEAM! Click on “Join a team” and enter my team name: “Phoenix Rising”. Why? A phoenix is a mythical bird that lives for 500 years. When it comes time to die, the phoenix bursts into flames and then rises from its own flames to be reborn. Autoimmune diseases are disorders of inflammation – fire in your body. That fire can consume you or you can be reborn from it. Please share!
To have your question featured in a future video, please email: questions@drmdc.health
Today's guest is Dr. Julia Speirings. Dr. Speirings is a rheumatologist from the Netherlands. She is doing a research project on the hands called Handsome. I was so excited to know that there was a project that deals with hands. My hands are a source of most of my frustration with Scleroderma. Listen to learn all about this project.
Today's guest, Tara Haneveld, received the same present as I did for my 40th birthday, a diagnosis of systemic scleroderma. And just like how my symptoms started to manifest with swelling fingers, hers did as well. Similarly, we both have watermelon stomach! Luckily, she was diagnosed within 3 months of her swelling. She says her being in the health field helped her quick diagnosis. As her scleroderma journey continued, Tara has taken on the role as Deputy Chair | Queensland Representative Scleroderma Australia.
Is there an increased risk of cancer once a patient has Scleroderma? If so, what is the risk and how does one go about showing this? Dr. Ami A Shah, Director of the Division of Rheumatology at Johns Hopkins sits down with us to explain those answers. We go over the methods, results and conclusions of the recent study Distinct Scleroderma Autoantibody Profiles Stratify Patients for Cancer Risk at Scleroderma Onset and During the Disease Course published in Arthritis & Rheumatology. Afterward, Dr. Shah shares with us her journey to becoming a physician-scientist and mentoring others in Scleroderma research through a K24 grant.
Today's guest is scleroderma warrior Liz Penwill. In the 2 years since Liz has been diagnosed, her life has been turned upside down. With all the changes she has had to endure, she has kept a positive attitude. Her laugh is contagious and she brings a great upbeat perspective to this disease.
In today's episode you'll meet Emma Blamont, she is the head researcher at Scleroderma and Raynaud's UK. Emma gives us the history of SRUK, what the organization offers, the research philosophy, and what SRKU focuses on when choosing their research.
In today's episode I chat with Glen and Elizabeth Copeland. Glen was diagnosed with Systemic Scleroderma in 2017. This is my first episode interviewing a warrior and their partner. It was so fascinating to get the perspective of both the patient and the caregiver.
Today's guest is Dr. Carrie Richardson. Dr. Richardson is a rheumatologist and the co-director of the Northwestern Scleroderma Program. It was wonderful to learn about Northwestern's Scleroderma Program. We discussed calcinosis, which many will know is a huge problem for me. We also talked about myositis, which I knew little about. She talked about the relationship between the esophagus and interstitial lung disease, a very interesting study. We end our talk on osteoporosis, and how it affects scleroderma warriors.
Today on my podcast I talk with 3 young women, Giovanna who has a Doctorate in Occupational Therapy, Kate a 2nd year Medical Student at Albany Medical School and Torie a 4th year Pharmacy Student at Albany College of Pharmacy and Health Sciences. These women participated in the interdisciplinary education event sponsored by the Stephen's Foundation. The Stephan's Foundation provides education on scleroderma. After attending the event, all 3 decided to research scleroderma in their respective fields.
QD250 - RA & Pleuritis https://youtu.be/t4xxK6wH9iU?si=z1XoXMhA33lhWviE QD251 - Eosinophilia in RA https://youtu.be/Qft9RGE2sBs?si=lLAL-sZRmjFIEKES QD252 - Uh oh, Scleroderma https://youtu.be/v5A5NSNk5wg?si=IdBW51AgVIHaORqr QD253 - SLE and PsA https://youtu.be/MGWfEiSA7ic?si=F8zU45CRHz4pOTht QD254 - How to Avoid Knee Arthroplasty https://youtu.be/ZfifWIfHV4E?si=n_XprFQih0FSz8md
Today's guest is Cosette Wu. Cosette is the founder of Scleroderma United. Their mission is connecting and empowering scleroderma warriors around the world. Cosette started the organization in high school after her grandfather died of scleroderma. It's a wonderful story!
In this deeply moving and inspirational episode of Healing The Source Podcast, we are honored to welcome Kalee Bachmann, a remarkable woman who has defied the odds of a terminal illness and is living a life full of purpose and vitality. Kalee's story is not just about survival; it's a testament to the power of resilience, faith, and a holistic approach to health. Kalee shares her journey, beginning with the life-altering diagnosis that set her on a path of self-discovery and healing. Refusing to accept an "expiration date" on her life, she delves into the realms of food, faith, and neuroscience to unlock her body's potential for healing and thriving. Kalee's story is a beacon of hope and inspiration. It's a call to all women to realize their own potential to thrive, regardless of the challenges they face. Her message is clear: life's limitations are often not as fixed as they seem, and with the right combination of food, faith, and science, we can transcend them. Join us in this episode as Kalee Bachmann inspires, educates, and empowers us to take control of our health and our lives, proving that sometimes, the human spirit can indeed defy the odds. References: Kalee's Instagram Healing The Source tea blends
In this episode, we explore why ACE inhibitors treat scleroderma renal crisis so effectively (and why bilateral nephrectomy used to be the treatment of choice…). Read the show notes on our website here. And subscribe to our new Substack! Click here to obtain AMA PRA Category 1 Credits™ (0.5 hours), Non-Physician Attendance (0.5 hours), or ABIM MOC Part 2 (0.5 hours). Audio edited by Clair Morgan of Nodderly.com. We'd like to welcome the newest member of our team, Giancarlo Buonomo, a medical student who is joining on as a producer!
Today's guest is scleroderma warrior Erion Moore. I was lucky enough to meet Erion at a leadership conference in New Orleans this October. He and I, unbeknownst to either of us, are on the same committee. It was so much fun to meet him in person. Erion is as witty and funny in person as he is as a guest.
Today's guest is film producer Christy McCaffrey. Christy's mom passed away from scleroderma. After the loss, she created a non-profit called Project Scleroderma. In our conversation, we talk about her mom's short journey with scleroderma, her mission with Project Scleroderma, and the films she has produced.
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