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