Ehlers-Danlos syndrome (EDS) is a group of inherited conditions. These conditions affect the connective tissues. This type of tissue is found all over the body. There are at least 6 different varieties of EDS. They are classified by the type of tissue most affected and how it is inherited.
EDS is caused by a problem in the genetic material. It mainly affects the genes that create connective tissue.
Most types of EDS affect the production of collagen. Collagen is an important part of connective tissue. It gives the tissue strength and allows it to stretch.
Having family members with EDS increases your chance of EDS.
The symptoms of EDS can vary. Some may have mild symptoms. Others may have severe and life-changing symptoms.
The most common symptoms of EDS include problems with the joints and skin. Joints are loose and unstable which can lead to:
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Skin is soft, fragile, and can stretch far too easily. This can lead to problems such as:
Other symptoms depend on the type of EDS you have. EDS can cause problems with
You will be asked about your symptoms and medical history. A physical exam will be done. This is usually enough to diagnosis EDS in most people. When the diagnosis is uncertain, tests may include:
There is no known cure for EDS. Treatment may be needed to manage symptoms and or to try to prevent complications.
Treatment will depend on your type of EDS and how severe it is.
For complications of the skin:
For musculoskeletal complications:
Some potential problems will need to be monitored. This includes people at risk for blood vessel complications. Your doctor may ask for regular testing to examine major blood vessels.
Blood transfusions may be needed for severe bleeding.
Certain steps may help you reduce the chance of complications. The following may help you:
There is no known way to prevent EDS. If you have EDS or have a family history of the condition, consider genetic counseling when deciding to have children. The counselor can talk to you about the risk of your child having EDS.
National Institute of Arthritis and Musculoskeletal and Skin Diseases
Ehlers-Danlos syndrome. EBSCO DynaMed website. Available at:http://www.dynamed.com/topics/dmp~AN~T116705/Ehlers-Danlos-syndrome. Accessed January 29, 2021.
Questions and Answers about Heritable Disorders of Connective Tissue. National Institute of Arthritis and Musculoskeletal and Skin Diseases website. Available at: http://www.niams.nih.gov/Health_Info/Connective_Tissue/default.asp. Accessed January 29, 2021.
Last reviewed March 2020 by EBSCO Medical Review Board Chelsea Skucek, MSN, BS, RNC-NIC