Ehlers Danlos Syndrome (EDS)
Fact: An estimated 1 in 5000 people have EDS. There is no cure.
What is Ehlers Danlos Syndrome?
The Ehlers-Danlos syndromes are inherited in the genes that are passed from parents to offspring. They are categorized according to the form of genetic transmission into different types with many features differing between patients in any given type. The fragile skin and loose joints and tissue fragility is often a result of abnormal genes that produce abnormal proteins that confer an inherited frailty of collagen.
In 2001, researchers discovered a new form of Ehlers-Danlos syndrome that is caused by an inherited abnormality in a protein other than collagen that also normally plays a role in binding together the cells of our tissues (including the skin, tendons, muscle, and blood vessels). Abnormalities in this protein, called tenascin, also lead to a form of Ehlers-Danlos syndrome. Researchers suspect that tenascin could play a role in regulating the normal distribution of collagen in the connective tissues of the body.
Want to learn more?
The following are organizations and/or websites dedicated to providing information and/or education surrounding Ehlers-Danlos Syndrome. These organizations are dedicated to research, education, awareness, and/or support. They are listed in Alphabetical order without any preference or prejudice. Listing these organizations is not a recommendation or referral in any regard for seeking treatment or consultation or support for treatment.
Ehlers-Danlos National Foundation
Ehlers Danlos Syndrome Network C.A.R.E.S. Inc.
Ehlers-Danlos Syndrome Support Group
National Institute of Arthritis and Musculoskeletal and Skin Diseases
National Organization for Rare Diseases
What defective genes cause EDS?
Classical EDS Symptoms:
Hypermobility EDS Symptoms:
Vascular EDS Symptoms: