Ehlers-Danlos syndrome (EDS) is a group of inherited conditions that affect collagen. Collagen is the material that provides strength and structure to skin, bone, blood vessels and internal organs.
EDS causes loose (hypermobile) joints, extremely elastic skin that bruises easily and fragile blood vessels.
There are six major types of Ehlers-Danlos syndrome that range from mild to life-threatening. The types of EDS are as follows:
Ehlers-Danlos syndrome is rare, affecting approximately one out of every 5,000 people.
Ehlers-Danlos: What you need to know
Typical symptoms of Ehlers-Danlos include the following:
- Loose joints (hypermobility)
- Joint dislocation
- Soft, elastic skin that bruises easily
- Easy scarring and poor wound healing
- Severe musculoskeletal pain, such as back or joint pain
In the most severe cases of Ehlers-Danlos syndrome, symptoms may include rupture of internal organs or blood vessels. It can also lead to heart problems such as mitral valve prolapse.
How can I get help for Ehlers-Danlos syndrome?
If you are concerned about your risk because you have a family history of Ehlers-Danlos syndrome or if you are planning to start a family, talk to your primary care doctor. You should also call your doctor if you have or if your child has any of the symptoms of EDS.
If your primary care doctor rules out other causes of your or your child's symptoms, he or she will make a referral to a specialist for a diagnosis.
Doctors diagnose Ehlers-Danlos syndrome, in part, by examining you and looking for certain signs of the syndrome.
Your doctor may need to do some tests to learn what type of EDS you have. This may include testing a skin sample to learn more about your collagen, which is abnormal in Ehlers-Danlos syndrome. Genetic testing may also be needed to determine what type of EDS you have.
Treatment for EDS
There is no cure for Ehlers-Danlos syndrome. Because Ehlers-Danlos syndrome affects many parts of your body, many specialists will help you manage your symptoms. These may include some of the following:
- Rheumatologists, who typically coordinate care for people with EDS
- Rehabilitation specialists
- Other medical and surgical specialists
Your care team will closely monitor you to look for signs that EDS is affecting your heart or other vital organs.
Maintaining a healthy lifestyle with EDS
If you have Ehlers-Danlos syndrome, it is important to learn how to protect your joints and prevent injuries. Here are some things you can do to maintain a healthy lifestyle:
- Avoid injury by not participating in high-contact sports or high-impact activities.
- Eat a balanced, healthy diet.
- Prevent falls by keeping doorways and walkways clear; avoid loose rugs or multiple cords on the floor.
- Use assistive devices such as utensils with wide handles, jar openers or long-handled brushes to avoid extra tension on your joints.
- Use mild soap and sunscreen to protect your easily damaged skin.
Care for Ehlers-Danlos syndrome at Rush
The Connective Tissue Disease Clinic offers a multidisciplinary approach to care for people with Ehlers-Danlos syndrome.