Ehlers-Danlos Syndrome

Hypermobile Ehlers-Danlos Syndrome

hEDS

Hypermobile EDS is the most common form of Ehlers-Danlos syndrome and is characterized by joint hypermobility, skin that may be soft or velvety, and chronic musculoskeletal pain in many patients. Diagnosis is clinical and relies on standardized criteria rather than a single genetic test. Management focuses on physical therapy, activity modification, and addressing associated symptoms such as dysautonomia and pain.

Prevalence
1 in 5,000-20,000
Inheritance
Autosomal dominant
Screened at Birth
No
On RUSP
No

About This Data

This disorder is part of the Cureledger rare disease data corpus. We are building privacy-preserving natural history datasets and advocacy tools for rare disease communities. Data is maintained by clinical advisors and the patient community.