Ep 158 Ehlers-Danlos, Hypermobility and Mast Cell Activation Syndromes with Jeannie di Bon

Jul 3, 2024

Jeannie Di Bon, a movement therapist specializing in hypermobility and Ehlers-Danlos Syndrome, shares her personal journey with chronic pain and complex diagnoses. She discusses the difficulties in properly diagnosing conditions like EDS and mast cell activation syndrome. Jeannie emphasizes the importance of clinician awareness and the emotional toll of misdiagnosis. She also introduces the Zebra Club, an online community offering resources and support for those affected, and explores the intersection of EDS with neurodivergent conditions like ADHD.

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Intro

00:00 • 2min

Understanding Ehlers-Danlos Syndrome and Hypermobility

01:56 • 10min

A Long Journey to Diagnosis: Ehlers-Danlos Syndrome and Personal Struggles

12:05 • 4min

Navigating Chronic Pain and EDS

16:28 • 6min

Understanding Ehlers-Danlos and Discovering Community Support

22:45 • 5min

Exploring the Intersections of EDS, Hypermobility, and Neurodivergence

27:22 • 5min

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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.

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