Ehlers-Danlos syndrome is a group of conditions that affect the connective tissues in the body. These tissues include cartilage, bone, fat and blood. They support organs and other tissues throughout the body.
Doctors classify Ehlers-Danlos syndrome into 13 types based on their most notable features and the parts of the body where symptoms appear. People with the most common type have symptoms including very loose joints and fragile skin that tears easily.
Ehlers-Danlos syndrome can be genetic, meaning it is passed down through family members. An estimated 1 in 5,000-20,000 people have the most common type of Ehlers-Danlos syndrome.
Each type of Ehlers-Danlos syndrome has its own symptoms. The most common type of the condition is Ehlers-Danlos hypermobility, or hypermobile EDS. Its symptoms include:
A defect in collagen (proteins that add flexibility and strength to connective tissue) causes Ehlers-Danlos syndrome. People with the disorder have a faulty gene that leads to weak collagen or not enough normal collagen in their tissues. These defects can harm the connective tissue’s ability to support muscles, organs, and other tissues.
Doctors use your family history and several tests to diagnose Ehlers-Danlos syndrome. Your diagnosis may involve:
Treatment for Ehlers-Danlos syndrome aims to prevent dangerous complications. It can also help protect the joints, skin, and other tissues from injuries. An individual’s treatment depends on many factors, including the type of the disorder and symptoms.
To protect the skin, doctors recommend using sunscreen and mild soaps. Taking extra Vitamin C can help reduce bruising. Physical therapy (exercises to strengthen the muscles supporting the joints) can help prevent joint injuries. Braces also help stabilize joints.
Because blood vessels are fragile, doctors will monitor people with Ehlers-Danlos syndrome and may use medication to help keep blood pressure low and stable.
Dislocated joints and other joint injuries are common among people with Ehlers-Danlos syndrome. For this reason, doctors recommend they avoid:
Because it is genetic, you cannot prevent Ehlers-Danlos syndrome.
The outlook for people with Ehlers-Danlos syndrome depends on the type of the condition and the individual’s symptoms. Most forms of the condition do not affect life expectancy.
What are common complications or side effects of Ehlers-Danlos syndrome?
The complications of some types of Ehlers-Danlos syndrome can be life-threatening. Some types, including vascular Ehlers-Danlos syndrome, can cause blood vessels to rupture (tear). When this happens, it can lead to dangerous internal bleeding and stroke.
People with these types of Ehlers-Danlos syndrome also have a higher risk of organ rupture. Most commonly, the intestines or a pregnant woman's uterus may tear.
The complications of other kinds of Ehlers-Danlos syndrome depend on the type. These complications can include:
Doctors can help you manage symptoms with physical therapy and, if needed, pain management. Monitoring Ehlers-Danlos syndrome through regular doctor visits is the best way to ensure the condition does not stand in the way of enjoying a healthy life.
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This information is provided by the Cleveland Clinic and is not intended to replace the medical advice of your doctor or healthcare provider. Please consult your healthcare provider for advice about a specific medical condition. This document was last reviewed on: 06/25/2018