Find EDS Specialists Near You

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome (EDS) is a group of 13 inherited connective tissue disorders that affect the body's collagen, the protein responsible for providing structure to skin, joints, blood vessels, and organs. The most common form, hypermobile EDS (hEDS), is characterized by joint hypermobility, chronic pain, fatigue, and frequently co-occurring conditions such as POTS (postural orthostatic tachycardia syndrome) and MCAS (mast cell activation syndrome). EDS is estimated to affect roughly 1 in 5,000 people worldwide, though many researchers believe hypermobile EDS is significantly underdiagnosed. The average time from symptom onset to diagnosis is 10 to 12 years.

What does that mean in plain terms? If you or someone you care about deals with joints that dislocate too easily, pain that never quite goes away, or fatigue that doctors can't fully explain, EDS might be part of the picture. The frustrating part is that most doctors aren't trained to recognize it, which is why so many people spend years searching for answers. This directory exists to shorten that search — connecting you with providers across 21 specialties — from physical therapy to genetics — who actually understand Ehlers-Danlos Syndrome.