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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