EB, Butterfly Warriors

Saturday, September 7, 2013

Jennifer (Lyric): I have a rare genetic skin disorder called Recessive Dystrophic Epidermolysis Bullosa, Inversa. Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder that prevents the body from producing key proteins that prevent tissue, internally & externally, from adhering to itself. This causes wounds that resemble third degree burns and is a painful and difficult disorder to treat. There is no cure. There is only wound care and pain management. I was 35 when I finally learned of products that helped. This was a direct result of ignorant doctors. I had been asking my doctors for years if there were any new products that could be used to help heal my wounds. I was, repeatedly, told "no". Those doctors were wrong. So many physicians and other medical staff, in every country, STILL know so little about Episermolysis Bullosa. Every day patients go untreated or misdiagnosed as a result. My goal is to bring helpful information, advice and products to the attention of anyone that is seeking it so that they can live a healthier, happier, less painful life.

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