Show Notes
Keywords
hypermobility, EDS, Integral Movement Method, Zebra Club, chronic pain, movement therapy, nervous system regulation, healthcare education, community support, patient advocacy
Summary In this episode of the Hacking Hypermobility, Luna and Shelli chat with Jeannie Di Bon, a movement therapist and founder of The Zebra Club. They discuss the challenges faced by individuals with Ehlers-Danlos Syndrome (EDS) and hypermobility, including personal experiences with diagnosis, the importance of community support, and the Integral Movement Method (IMM) developed by Jeannie.
The conversation emphasizes the need for better education among healthcare providers, the significance of nervous system regulation, and the role of the Zebra Club app in providing resources and support for the hypermobile community.
Full show notes available here.
Takeaways Jeannie Di Bon developed the IMM to help those with EDS and chronic pain. The Zebra Club app offers community, movement classes, and educational resources. Nervous system regulation is crucial before engaging in physical activity. Personal experiences with diagnosis can shape professional practices. The importance of individualized approaches in movement therapy for hypermobile patients. Community support is vital for those living with chronic conditions. Education for healthcare providers about EDS is lacking and needs improvement. Gentle, gradual movement is more effective than high-intensity workouts for hypermobile individuals. The IMM is evidence-based and focuses on integrating movement with mindfulness. Awareness and advocacy for EDS and hypermobility are essential for improving patient care.
Resources & Links Full Show Notes Available Here!
Jeannie's Website: https://jeanniedibon.com The Zebra Club App: https://www.thezebra.club Get Jeannie's Book, Hypermobility Without Tears Bookshop.org Amazon (US) Amazon (UK)
More from Hacking Hypermobility
Luna and Shelli review the good, bad, and the hilarious from their time at the EDS Society's 2026 Global Learning Conference.
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We're baaaaaaack. Buckle up, buttercups, this season opener is almost two hours long! References: EDS Society 2026 Global Learning Conference Information: https://www.ehlers-danlos.com/2026-global-learning-conference/ Petrucci-Nelson T, Guilhaumou S, Berrandou TE, Gensemer C, Georges A, Huff M, Fustier MA, Esmael A, Henry J, Jaye O, Phookan R, Dooley S, Byerly K, Loizzi B, Fenner R, Mach E, Weintraub A, Daylor V, Weninger J, Koren N, Bistran E, Griggs C, Griggs M, Severance S, Byrd R, Patel S, Kautz SA, Maitland A, Bouatia-Naji N, Norris RA. Complex Genetics and Regulatory Drivers of Hypermobile Ehlers-Danlos Syndrome: Insights from Genome-Wide Association Study Meta-analysis. medRxiv [Preprint]. 2025 Sep 21:2025.09.19.25336146. doi: 10.1101/2025.09.19.25336146. PMID: 41001447; PMCID: PMC12458961. Griggs M, Daylor V, Petrucci T, Weintraub A, Huff M, Willey S, Byerly K, Loizzi B, Morningstar J, Ball LE, Bethard JR, Drake R, Sharma A, Eichinger JK, Nichols M, Kautz S, Shapiro S, Maitland A, Patel S, Norris RA, Gensemer C. Proteomic discoveries in hypermobile Ehlers-Danlos syndrome reveal insights into disease pathophysiology. Immunohorizons. 2025 Sep 17;9(10):vlaf044. doi: 10.1093/immhor/vlaf044. PMID: 40972649; PMCID: PMC12448790. Gensemer C, Petrucci T, Beck T, Daylor V, Griggs M, Griggs C, Weintraub A, Byerly K, Guo L, Morningstar J, Kornblau I, Biggs R, Moore K, Koren N, Hastings C, Oberlies E, Zientara ER, Devey E, Dooley S, Stayer K, Fenner R, Singleton K, Luzbetak S, Bear D, Byrd R, Weninger J, Bistran E, Beeson G, Kerns J, Osterhaus M, Fleck E, Schnaudigel J, Butler S, Severance S, Kendall W, Delaney JR, Judge DP, Chen P, Yao H, Guz J, Awgulewitsch A, Kautz SA, Mukherjee R, Price R, Henderson F Sr, Shapiro S, Francomano CA, Kovacic JC, Lavallee M, Kontorovich AR, Berrandou TE, Slaugenhaupt SA, Milan D, Maitland A, Patel S, Bouatia-Naji N, Norris RA. KLK15 alters connective tissues in hypermobile Ehlers-Danlos syndrome. iScience. 2025 Aug 12;28(9):113343. doi: 10.1016/j.isci.2025.113343. PMID: 40949095; PMCID: PMC12424230. Due to size limitations, the preceding is a truncated list of studies referenced in this episode. Check out https://hackinghypermobility.com for a complete list.
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Summary It's our Third Birthday! Yay! Celebrate by taking a quick look back at some unseen footage from July 2022. Later in the episode, Luna and Shelli continue their conversation with Dr. Tina Wang. Keywords hypermobility, Ehlers-Danlos syndrome, community support, advocacy, personal stories, awareness, medical care, mental health, holistic approaches, podcasting Takeaways Community support is crucial for individuals with hypermobility. Personal stories can help others feel less alone in their struggles. Advocacy and awareness are essential for improving care for hypermobility disorders. The importance of holistic approaches in managing health conditions. Sharing experiences can lead to greater understanding and empathy. Elevating marginalized voices is a priority in the hypermobility community. The podcast aims to bring diverse perspectives to the forefront. Emotional health is intertwined with physical health in managing hypermobility. Future goals include expanding outreach and resources for the community. The journey of understanding and managing hypermobility is ongoing and requires collaboration.