What it is
Ehlers-Danlos Syndrome is a group of heritable connective tissue disorders affecting collagen — the protein that holds the body together. The hypermobile type (hEDS) is the most common and the hardest to diagnose because there's no genetic test for it.
Why it's hard to navigate
Most providers have limited training in EDS. Symptoms — joint pain, fatigue, GI issues, dysautonomia — get attributed to anxiety, deconditioning, or other conditions. The average time to diagnosis is 22 years. Finding the right specialist combination requires knowing where to look.
Where we can help
We help clients identify the right specialist types, find providers with real EDS experience, prepare for evaluations, and build a coordinated care team across genetics, PT, cardiology, and beyond.