Abbey Phillipson on Visibility & Advocacy for Rare Types of EDS

  Host Dr. Libby Hinsley interviews Abbey Phillipson, a classical Ehlers-Danlos syndrome (EDS) advocate and Paralympic strength and conditioning coach at the University of Michigan. Abbey shares her experience with early signs, diagnosis via genetics (COL5A1), and serious complications of Classical EDS.   She discusses why some rare EDS types may be diagnosed earlier yet still missed, de novo mutation rates, and definitions and prevalence of rare vs ultra-rare EDS types. Abbey describes founding the patient-led Collagen Advocacy Network to connect people with rare subtypes, critiques how growing EDS awareness can create misunderstanding of rare types, and proposes more nuanced naming to support individualized care amid anticipated 2026 criteria changes.   She also shares a bit about her inspiring work in adaptive sports and disability-inclusive fitness.   00:00 Welcome to Zebra Talks 00:35 Meet Abbey Phillipson 01:59 Classical EDS Diagnosis Story 04:07 Symptoms and Complications 05:55 When Rare Types Get Diagnosed 07:46 De Novo Mutations Explained 08:42 Rare vs Ultra Rare Prevalence 11:51 Building a Rare Types Group 13:21 Making Rare Real Together 14:36 Awareness Boom and Erasure 19:21 A More Nuanced Future 22:54 Renaming and Reorganizing EDS 26:34 Criteria Changes and 2026 30:58 Collagen Advocacy Network 32:08 Paralympic Coaching and Adaptive Sport 34:34 Strength Training and Joyful Movement 35:48 Final Thanks and Goodbye