Conquering Your Fibromyalgia Podcast
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.
33:51
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Quick takeaways
- The challenges of diagnosing Ehlers-Danlos Syndrome highlight the importance of validation and timely access to proper medical care for patients.
- The Zebra Club serves as a vital online resource that fosters community support and provides movement therapy tailored to individuals with EDS and related conditions.
Deep dives
Understanding Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder
Ehlers-Danlos Syndrome (EDS) is characterized as a group of hereditary connective tissue disorders, with hypermobile EDS being the most prevalent. While hypermobility can exist without symptoms, it can also lead to significant pain and complications, warranting an investigation into EDS or hypermobility spectrum disorder (HSD). The diagnostic process generally involves clinical criteria rather than genetic testing, particularly for hypermobile EDS, where a genetic cause remains unidentified. Notably, many individuals face challenges in obtaining timely diagnoses due to a shortage of specialists and potential misinterpretation of their symptoms.
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