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Understanding Ehlers-Danlos Syndrome: Insights from Jeannie Di Bon
In this episode, a special guest, Jeannie Di Bon, a movement therapist who specializes in hypermobility, Ehlers-Danlos Syndrome (EDS), and chronic pain, shares her expertise and personal journey. Diagnosed with EDS, Mast Cell Activation Syndrome, POTS, and chronic fatigue syndrome, Jeannie discusses the challenges of diagnosing these conditions, the significance of diagnosis for patients, and her development of a supportive online community and tools via the Zebra Club. She also addresses the complexities of EDS, similar conditions, and the importance of clinician awareness.
00:00 Welcome to the Podcast: Introducing Jeannie Di Bon
01:15 Understanding Ehlers Danlos and Hypermobility
03:26 The Challenge of Diagnosis and Misdiagnosis
09:59 Jeannie's Personal Journey with EDS
14:13 From Chronic Pain to Movement Therapy: Jeannie's Professional Evolution
22:14 Expanding Access: The Zebra Club and Online Resources
24:58 Addressing Comorbidities: ADHD, Autism, and Hypermobility
26:51 Final Thoughts: Hope, Support, and Education
Joy Lenz
Fibromyalgia 101. A list of fibromyalgia podcast episodes that are great if you are new and don't know where to start.
Support the show
When I started this podcast—and the book that came before it—I had my patients in mind. Office visits are short, but understanding complex, often misunderstood conditions like fibromyalgia takes time. That’s why I created this space: to offer education, validation, and hope. If you’ve been told fibromyalgia “isn’t real” or that it’s “all in your head,” know this—I see you. I believe you. You’re not alone. This podcast aims to affirm your experience and explain the science behind it. Whether you live with fibromyalgia, care for someone who does, or are a healthcare professional looking to better support patients, you’ll find trusted, evidence-based insights here, drawn from my 28+ years as an MD.
Please remember to talk with your doctor about your symptoms and care. This content doesn’t replace personal medical advice.*
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