The Ehlers-Danlos Society

The Ehlers-Danlos Society is a global community of patients, caregivers, health care professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and related conditions.

With offices in the US and the UK, we support collaborative research, education,  advocacy, community-building, and care for the EDS and HSD population.

The Ehlers-Danlos Society seeks to grow world-wide awareness — and a better quality of life for all who suffer from these conditions. Research is at the center of what we do, so that one day we will have a cure. 

The Ehlers-Danlos Society was originally established as a nonprofit organization in 1985 as the Ehlers-Danlos National Foundation (EDNF) by Nancy Hanna Rogowski (1957–1995).

ABOUT THE EHLERS-DANLOS SYNDROMES AND HYPERMOBILITY SPECTRUM DISORDERS

The Ehlers-Danlos syndromes (EDS) are a group of 13 heritable connective tissue gene disorders that produce a spectrum of complex problems across multiple systems of the body. The physical characteristics that are common to all types of EDS include hypermobile joints, skin hyperextensibility, and tissue fragility. EDS are known to affect more than one in 5,000 men and women, of every race and ethnicity.

Each person’s case of Ehlers-Danlos syndrome is unique. Severity may range dramatically, even within families. Prognosis depends on the type of Ehlers-Danlos syndrome and the individual.

Hypermobile Ehlers-Danlos Syndrome  (hEDS)

Hypermobile EDS (hEDS) typically begins with extreme joint hypermobility,  joints which can stretch beyond normal limits; a propensity for sprains, strains, subluxations, and dislocations; pain, often in lower limbs, and with fine motor or repetitive tasks; and easy fatigability.

Although each person with hEDS faces their own set of problems out of the wide range of possible effects, hEDS generally evolves over time. The initial “hypermobility”phase may involve the ability to hyperextend various body parts to extremes normally attributed to contortionists, gymnasts, or elite dancers. Over time, the extreme hypermobility and connective tissue instability of hypermobile EDS may lead to permanent injuries. The “pain” phase involves widespread and worsening pain and headache; pelvic pain in women; and worsened fatigue. The “stiffness” phase seen in some adults and in the elderly results in general reduction in joint hypermobility; significant losses in functionality because of disabling pain and fatigue; and increased limitations, due to reduced muscle mass and weakness, prior injuries, and arthritis.

While certain features of hypermobile EDS are not yet in the diagnostic criteria — as more research is needed to prove causation and the relationships between the hEDS and potential comorbidities — clinical descriptions of hEDS have expanded beyond joint hypermobility to include: chronic pain and fatigue, gastrointestinal disorders, neurological issues, dysautonomia, and anxiety. As of this time, hypermobile EDS has no identified distinctive cause.

Hypermobility Spectrum Disorders (HSD)

The hypermobility spectrum disorders (HSD) describe patients with symptomatic joint hypermobility not corresponding to other known conditions. The spectrum of HSD ranges from secondary musculoskeletal manifestations, and a simplified categorization of genetic syndromes featuring joint hypermobility.

Vascular Ehlers-Danlos Syndrome (vEDS)

Life expectancy can be significantly shortened for those with the Vascular Ehlers-Danlos syndrome (vEDS) due to potential for organ and/or blood vessel rupture. While significantly diminished life expectancy is not usually a factor in the other types, quality of life can be severely affected by chronic pain, disability, and myriad comorbidities. There are no cures for the Ehlers-Danlos syndromes, but there are treatments which address many symptoms and preventative measures that may help slow their progression.