Ehlers-Danlos Sydrome Symptoms, Treatment

Helping a loved one deal with Elhers-Danlos syndrome can be difficult. It is a unique disease that can be mild, crippling, or deadly. Individuals suffering from Elhers-Danlos syndrome face many problems in their everyday life and having a support system of understanding friends and family to encourage them can make a huge difference.

Elhers-Danlos syndrome is an inherited cluster of disorders caused by a genetic mutation that affects the collagen production within the body. With too much or too little collagen, the body cannot properly form organs, skin, muscles, bones, or blood vessels. That causes individuals suffering from Elhers-Danlos syndrome to have many problems ranging from abnormally flexible joints to extremely fragile skin.

There is no cure for Elhers-Danlos syndrome, and the prognosis depends on the type of EDS an individual has. There are more than ten documented types of Elhers-Danlos syndrome, but hypermobility and classical type are the most commonly seen. In fact, the other types are so rare that for many, less than 100 cases have been reported for each.

Hypermobility is marked by extreme flexibility of joints. Classic type of Elhers-Danlos syndrome is marked by extremely elastic skin that can be easily injured or damaged. Since Elhers-Danlos syndrome can range in severity, many individuals suffering form it must live each day around their disorder.

In the more serious types of Elhers-Danlos syndrome, individuals must take care to not receive injury, even the slightest, as it could lead to ruptured skin, blood vessels, and organs. Some women with Elhers-Danlos syndrome are unable to have children and must take great care to not get pregnant.

Most sufferers from Elhers-Danlos syndrome must deal with psychological trauma as well, since they often feel judged for their abnormal appearance or cautious approach to life. Individuals suffering from Elhers-Danlos Syndrome require a support system to prevent depression and other complications from this disorder.

It is important to listen and talk to your loved one and encourage them to keep their life on track despite their disorder. Being reminded that Elhers-Danlos syndrome does not define them can help them cope better with their disorder.

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  1. I was just told today that I may have this and I am very confused. I went to the orthopedic to see about getting my knee operated on because my knees dislocate themselves and my left knee has now become more of a problem now and is painful. My doctor said that I most likely have this due to my extreme flexibilty and ability to dislocate several other joints. He said that because I may have this I am too high risk to recieve surgery and that I should just live with it the best I can. Does anyone know why this condition would make me too high risk for surgery? This is all new and confusing and scary. He also said that I am very young which is why it hasn’t been discovered sooner.

  2. about 3 years ago i went to an orthopedist for knee pain and dislocation and he referred me to a dermatology who sent me to a genetists who confirmed i have hypermobility ehlers danlos. there is no true gene for the hypermobility diagnosis, but rather ruling out other things. i have gone to a phy therapist who has helped me gain strength in my leg and the pain has subsided significantly. i also try to swim regularly, which seems to help. the orthopedist i went to is still willing to operate on my knee, but i feel like what is the point if it will probably just go back to this situation and surgery has its own risks. ehlers danlos really has not impacted my life up until now so as long as i am careful i don’t plan on it interfering going forward either. good luck and go see a geneticist if you want to know for sure.

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