What is Ehlers-Danlos syndrome?
Ehlers-Danlos syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provides strength and elasticity to the underlying structures in your body.
People who have Ehlers-Danlos syndrome usually have overly flexible joints and stretchy, fragile skin. This can become a problem if you have a wound that requires stitches, because the skin often isn’t strong enough to hold them.
A more severe form of the disorder, called vascular Ehlers-Danlos syndrome, can cause the walls of your blood vessels, intestines or uterus to rupture. If you have vascular Ehlers-Danlos syndrome, you may want to talk to a genetic counselor before starting a family.
How common is Ehlers-Danlos syndrome?
Although it is difficult to estimate the overall frequency of Ehlers-Danlos syndrome, the combined prevalence of all types of this condition may be about 1 in 5,000 individuals worldwide. Please discuss with your doctor for further information.
What are the symptoms of Ehlers-Danlos syndrome?
The common symptoms of Ehlers-Danlos syndrome are:
- Overly flexible joints. Because the connective tissue that holds joints together is looser, your joints can move far past the normal range of motion. Small joints are affected more than large joints. You might also be able to touch the tip of your nose with your tongue.
- Stretchy skin. Weakened connective tissue allows your skin to stretch much more than usual. You may be able to pull a pinch of skin up away from your flesh, but it will snap right back into place when you let go. Your skin might also feel exceptionally soft and velvety.
- Fragile skin. Damaged skin often doesn’t heal well. For example, the stitches used to close a wound often will tear out and leave a gaping scar. These scars may look thin and crinkly.
Symptom severity can vary from person to person. Some people with Ehlers-Danlos syndrome will have overly flexible joints, but few or none of the skin symptoms.
There may be some symptoms not listed above. If you have any concerns about a symptom, please consult your doctor.
When should I see my doctor?
If you have any signs or symptoms listed above or have any questions, please consult with your doctor. Everyone’s body acts differently. It is always best to discuss with your doctor what is best for your situation.
What causes Ehlers-Danlos syndrome?
Different subtypes of Ehlers-Danlos syndrome are associated with a variety of genetic causes, some of which are inherited and passed on from parent to child. If you have the most common varieties of Ehlers-Danlos syndrome, there’s a 50 percent chance that you’ll pass on the gene to each of your children.
What increases my risk for Ehlers-Danlos syndrome?
Please discuss with your doctor for further information.
Diagnosis & treatment
The information provided is not a substitute for any medical advice. ALWAYS consult with your doctor for more information.
How is Ehlers-Danlos syndrome diagnosed?
Extremely loose joints, fragile or stretchy skin, and a family history of Ehlers-Danlos syndrome are often enough to make a diagnosis. Genetic tests on a sample of your blood can confirm the diagnosis in some cases and help rule out other problems.
How is Ehlers-Danlos syndrome treated?
There is no cure for Ehlers-Danlos syndrome, but treatment can help you manage your symptoms and prevent further complications.
Your doctor may prescribe drugs to help you control:
- If over-the-counter pain relievers — such as ibuprofen (Advil, Motrin IB, others) and naproxen sodium (Aleve) — aren’t enough, your doctor may prescribe stronger medications for your joint or muscle pain.
- Blood pressure. Because blood vessels are more fragile in some types of Ehlers-Danlos syndrome, your doctor may want to reduce the stress on the vessels by keeping your blood pressure low.
Joints with weak connective tissue are more likely to dislocate. Exercises to strengthen the muscles around a joint can help stabilize the joint. Your physical therapist might also recommend specific braces to help prevent joint dislocations.
Surgical and other procedures
In rare cases, surgery is recommended to repair joints damaged by repeated dislocations. However, your skin and the connective tissue of the affected joint may not heal properly after the surgery.
Lifestyle changes & home remedies
What are some lifestyle changes or home remedies that can help me manage Ehlers-Danlos syndrome?
The following lifestyles and home remedies might help you cope with Ehlers-Danlos syndrome:
- Choose sports wisely. Avoid contact sports, weightlifting and other activities that increase your risk of injury. Minimize stress on your hips, knees and ankles that can be caused by running, climbing stairs or step aerobics.
- Rest your jaw. To protect your jaw joint, avoid chewing gum, hard rolls and ice. Take breaks during dental work to close your mouth.
- Avoid certain musical instruments. To prevent a collapsed lung, avoid playing reeded wind or brass instruments. The violin or piano would be safer options and would take advantage of the increased flexibility of your hands.
If you have any questions, please consult with your doctor to better understand the best solution for you.
Hello Health Group does not provide medical advice, diagnosis or treatment.
Ehlers-Danlos syndrome. http://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/basics/lifestyle-home-remedies/con-20033656. Accessed July 19, 2017.
Ehlers-Danlos syndrome. https://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome#statistics. Accessed July 19, 2017.
Review Date: July 20, 2017 | Last Modified: September 13, 2019