19: What Is a Patient Advocate, and Do You Need One?

Luna and Shelli review the good, bad, and the hilarious from their time at the EDS Society's 2026 Global Learning Conference.

All about Shell's recent BVD diagnosis and prism glasses

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.

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.