FAQs in Ehlers-Danlos Syndrome

A diagnosis of Ehlers-Danlos syndrome (EDS) often leaves patients and their families with many questions. It can be hard to find information about rare diseases and connect with other patients.

Here are some frequently asked questions about EDS.

What is EDS?

EDS is a group of disorders that weaken the connective tissues that support skin, blood vessels, bones, and other organs.

How do I know if I have EDS?

Most patients with EDS have hypermobility in their joints — meaning that their joints move past what is possible for those without the disorder. Patients with EDS also have soft, velvety skin, which is very stretchy and easily damaged. Patients may also bruise easily. Some forms of EDS can cause heart problems.

How common is EDS?

EDS is a rare disease, affecting about 1 in 5,000 people, though some forms of the disease are rarer.

Read about patient stories and experiences in the columns “Black and Blue Ribbons” by Karen Del Vecchio and “Unbreakable” by Kimberly Stark Horn.

Is EDS contagious?

No, EDS is not contagious.

Can EDS be inherited?

Yes, EDS can be inherited, though some cases occur because of new mutations (that is, patients may have no family history of the disease).

Where can I find out more about treatments and research?

We regularly publish articles on our website that cover a range of news about EDS research, including new treatment options in development.

The following organizations also offer information about treatments and ongoing research in EDS:

• The Ehlers-Danlos Society
• Annabelle’s Challenge
• EDS Today
• Ehlers-Danlos Support Group UK
• European Skeletal Dysplasia Network
• NIH/National Institute of Arthritis and Musculoskeletal and Skin Diseases

Last updated: July 30, 2019

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Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.