Petition Closed

Support Research for Ehlers-Danlos Syndrome

This petition had 58 supporters

Ehlers-Danlos syndrome (EDS) is a group of hereditary connective tissue disorders characterized by defects of the major structural protein in the body (collagen). Collagen, a tough, fibrous protein, plays an essential role in holding together, strengthening, and providing elasticity to bodily cells and tissues. Due to defects of collagen, primary EDS symptoms and findings include abnormally flexible, loose joints (articular hypermobility) that may easily become dislocated; unusually loose, thin, stretchy (elastic) skin; and excessive fragility of the skin, blood vessels, and other bodily tissues and membranes.

There are multiple types of EDS, and each type has it's own separate list of symptoms and treatments. Currently, very few doctors are educated in this disorder, and the testing for it is highly inaccurate. EDS is a genetic disorder, but it does not yet have a successful genetic test. The Hypermobility Type (formerly know as Type III), is the most common type, but to this day, no distinctive biochemical collagen finding has been identified by researchers. It is believed to be inherited in an autosomal dominant manner. In laymans terms- they haven't yet found the exact gene or gene mutation that causes it. 

I was diagnosed with Ehlers-Danlos Syndrome this year, at the age of 17. I had been searching for the proper diagnosis since 2014, and had been misdiagnosed with almost a dozen different illnesses, ranging from Fibromyalgia to Late Stage Lyme Disease. I have been showing symptoms my entire life, but, like in many cases, it got much worse once I reached adolescence, and then I had an injury exacerbate it. 

With around 1 in 15,000 babies being born with the hypermobility type of Ehlers-Danlos Syndrome each year, it is astonishing that we still don't know what causes it. Finding the gene will be crucial in research for treatments, and perhaps, one day, a cure. 

Today: Invisible No More is counting on you

Invisible No More needs your help with “United States Department of Health and Human Services: Support Research for Ehlers-Danlos Syndrome”. Join Invisible No More and 57 supporters today.