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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All about Shell's recent BVD diagnosis and prism glasses

Resources:

Neurolens

Many thanks to:

Carolyn Stanley - Shelli's youngest kiddo and bendy art student

Joe O'Connor - Newton Tech

Navindi Weerasinghe - Chief Optician at Peepers Crofton/Gambrills

Drs. Patel of Peepers Crofton/Gambrills

00:00 Introduction to the episode and personal health story

01:11 Explanation of binocular vision dysfunction and symptoms

02:38 Personal struggles with eye strain and vision focus

04:05 The process of getting prescribed neural lens glasses

07:12 Confirmation of vision issues through testing

10:40 Understanding the diagnosis and its implications

12:16 Connection to other health conditions and experiences

16:50 Explanation of eye strain and focus challenges

24:20 The impact of new glasses on vision and daily life

35:05 Experiencing the benefits of neural lens glasses

37:40 Fashion and functionality with new eyewear

38:27 Closing remarks and resources for viewers

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.

Dr. Akilah Cadet is the founder and CEO of Change Cadet, an organizational development consulting firm. As a Forbes Next 1000 entrepreneur, her work is behind some of the biggest brands that you use every day. Dismantling white supremacy through storytelling is at the core of her work as a leader, speaker, creative director, producer, writer and editor.

Dr. Cadet is the co-owner of the Oakland Roots and Soul soccer team and author of the book White Supremacy is All Around Notes from a Black Disabled Woman in a White World.

Visit Dr. Cadet at https://changecadet.com or check out Dr. Cadet's podcast Humane Rights.

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.

Summary

In this episode, Luna and Shelli interview Dr. Tina Wang, a leading expert in fascia and hypermobility disorders. They discuss the importance of fascia in the body, its role in conditions like Ehlers-Danlos Syndrome, and the challenges faced in diagnosing and treating these disorders. Dr. Wang shares insights from her research, the significance of holistic care, and the need for better education and advocacy in the medical community. The conversation also touches on innovative treatment options and the upcoming Fascia Research Congress, highlighting the importance of collaboration in advancing the understanding of fascia and its impact on health.

~~~~

"Fascia is a system that permeates every organ."

"Fascia is crucial to all our metabolic processes."

"We are spiritual beings in a physical body."

Keywords

fascia, hypermobility, Ehlers-Danlos Syndrome, pain management, holistic health, proprioception, fascia research, chronic pain, treatment options, patient advocacy

Takeaways

Fascia is a crucial system that permeates every organ in the body.

Hypermobility is common in dancers and musicians, leading to unique challenges.

The treatment outcomes for myofascial pain are often unsatisfactory.

Patients need to learn how to manage their healthcare providers effectively.

Fascia plays a significant role in metabolic processes and overall health.

There is a need for clear diagnostic standards for hypermobility disorders.

Every patient requires an individualized treatment approach.

Many individuals with hypermobility are also highly sensitive and intuitive.

The Fascia Research Society is actively seeking collaborators for research.

Holistic care is essential for managing complex conditions like EDS.

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)

Shelli explores the personal experiences of multiple surgeries, focusing on the scheduling, preparation, recovery, and interactions with healthcare professionals.Shelli also shares insights into the challenges faced during the surgical process, including anesthesia, pain management, and the importance of patient advocacy in navigating medical care.

Tiffany shares some exciting news for mid-atlantic zebras

Luna is the jokester in this episode!

Keywords

surgery, recovery, anesthesia, patient experience, healthcare, hand surgery, hip surgery, medical interactions, patient advocacy, health management

Takeaways

• Surgery scheduling can be influenced by personal circumstances.
• Experiences with different types of surgeries can vary significantly.
• Preparation for surgery includes managing anxiety and ensuring hydration.
• Post-surgery recovery involves pain management and mobility exercises.
• Follow-up care is crucial for monitoring healing and addressing complications.
• Interactions with healthcare professionals can impact the overall experience.
• Patient advocacy is essential in ensuring proper care and communication.
• The importance of personal comfort items during surgery, like grippy socks.
• Understanding the role of anesthesia in the surgical process is vital.
• Ongoing challenges can arise even after successful surgeries.

Links

UVA EDS Clinic Press Release - https://news.med.virginia.edu/clinical/uva-health-launching-comprehensive-national-program-for-connective-tissue-disorders/

In this episode, Tiffany warns about having surgery on both hands on the same day.

Does anyone actually read these descriptions? If you're reading this, not on podcast staff, and have the spoons, leave us a review or comment and tell us about this silly episode description!