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What is Ehlers-Danlos syndrome? — Ehlers-Danlos syndrome (also called "EDS") is the name for a group of disorders that involve problems with the body's "connective tissues." Connective tissues make up and support the skin, bones, blood vessels, and other organs.
There are 6 main types of EDS (table 1) and 13 types overall. Some types are very rare. Most types are caused by a problem with one or more genes. For the most common type ("hypermobility" EDS), the exact cause is not yet known, although experts suspect it is also genetic.
In some cases, people get EDS because they get an abnormal gene from one or both of their parents. In other cases, the abnormal gene does not come from either parent, but appears on its own.
What are the symptoms of EDS? — Each type of EDS has slightly different symptoms. In most cases, the skin and joints are affected.
Common symptoms of EDS include:
●Stretchy skin – The skin stretches more than normal if you pull on it. The medical term for this is "hyperextensibility."
●Easy bruising of the skin
●Thin skin that can get cut easily – Cuts can take longer to heal. When they do heal, they can leave abnormal-looking scars.
●Joints that are too loose and more flexible than normal – The medical term for this is "hypermobility." Loose joints can lead to problems like dislocation (when a joint pops out of place) or pain.
Some types of EDS can lead to more serious problems. For example:
●Heart problems – Some people with EDS have heart problems, although this is uncommon. One example is a widening of the aorta, which is the big artery that carries blood from the heart to the rest of the body. Another example is a condition called "mitral valve prolapse," in which one of the valves in the heart doesn't close normally. These heart problems are not always serious, but if you have them, your doctor can decide if they need treatment.
●A "rupture" or tear inside the body – The most serious problem that can happen is a sudden tear in a blood vessel or organ wall. When this happens, it can cause internal bleeding and be life threatening. But this is usually only a risk with certain types of EDS, including "vascular" EDS.
Is there a test for EDS? — There are tests that can check for the genes that cause most types of EDS. But the most common type, called "hypermobility EDS," does not have a test. That's because doctors don't yet know which gene is affected in most people with this type.
How is EDS treated? — There is no cure for EDS. But your doctor or specialist can work with you to treat some of the symptoms and prevent or reduce some of the problems EDS can cause. Treatments can include:
●Physical therapy – You can work with a physical therapist (exercise expert) to learn exercises to safely strengthen your muscles and joints.
●Braces or other devices – Knee braces, shoe inserts, or a cane can help support the joints.
●Pain medicines – Your doctor might tell you to take acetaminophen (sample brand name: Tylenol) for joint and muscle pain. They might also suggest NSAIDs, which include aspirin, ibuprofen (sample brand names: Advil, Motrin), and naproxen (sample brand name: Aleve). But NSAIDs might not be safe in people whose skin bruises easily.
●Counseling – Living with EDS can be stressful, especially if you have pain or have to limit your activities. If you are having a hard time, counseling can help. You might also find it helpful to join a support group where you can talk to other people with EDS.
Many people with EDS need to see a heart doctor regularly. This is to monitor any heart problems and check for new ones.
If you suddenly get any of the following symptoms, go to the emergency room right away or call for an ambulance (in the US and Canada, dial 9-1-1). These can be signs of internal bleeding or other serious problems caused by some types of EDS:
●Chest, back, or belly pain
●Trouble breathing
●Severe headache
●Dizziness
Is there anything I can do on my own? — Yes. There are things you can do to help with symptoms and prevent injury. You can:
●Get exercise, but be careful, and stop if your joints or muscles hurt.
●Avoid contact sports and other activities that could hurt your joints (like running). Try gentle activities like swimming or Tai Chi instead.
●Take hot baths to help with joint pain.
●Protect your skin with bandages or pads, especially if you often get cuts in certain areas (like the knees or shins).
●Avoid chewing gum and biting into hard foods, as this can cause jaw pain.
What if I want to get pregnant? — If you or your partner want to get pregnant, talk with your doctor or nurse before you start trying. If either of you has EDS, your children have a chance of getting it, too. You will probably want to meet with a geneticist or genetic counselor. They can help you understand what having the gene could mean for you and your family.
Women with EDS who do get pregnant need special care. Each type of EDS has different risks for a pregnant woman and her baby. You (or your partner) will need to see a doctor with experience caring for women with "high-risk" pregnancies.
What will my life be like? — It depends on which type you have. People with some types of EDS might only have mild symptoms, like stretchy skin and loose joints. But people with the more serious types can have life-threatening internal bleeding.
Every person is different, and it's impossible to know exactly how your EDS will affect you. But your doctor or nurse can talk to you about what to expect. It might also be helpful to talk with a specialist in medical genetics who has experience with EDS.
Patient education: Nonsteroidal antiinflammatory drugs (NSAIDs) (The Basics)
Patient education: Mitral valve prolapse (The Basics)
Patient education: Nonsteroidal antiinflammatory drugs (NSAIDs) (Beyond the Basics)
