Joint Issues On Being Diagnosed with Ehlers-Danlos Syndrome | oneedsvoice

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Joint Issues On Being Diagnosed with Ehlers-Danlos Syndrome


Since 2013, I have been navigating a disease called Ehlers-Danlos Syndrome. I post on issues pertinent to the psychology of living with a chronic illness. I also give the run-down on articles and information I have found helpful and supportive in dealing with chronic pain, finding knowledgeable doctors, and coping with living with an “invisible illness.” Many people with EDS ‘look healthy.’ It is a blessing, but it also makes those who deal with it feel alone and dismissed.

I was diagnosed with Ehlers-Danlos Syndrome – Hypermobility type (or EDS, Type 3) at the beginning of 2013 by a geneticist at Wake Forest Baptist Hospital. EDS is a heritable genetic disease meaning you inherit the condition from one or both of your parents. There are many types of EDS, some more severe than others in terms of quality of life and lifespan. The condition is cut from the same cloth as Marfans and Osteogenesis Imperfecta (aka brittle bone disease) which some people have seen portrayed in the movies or heard of in the news.