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These products have been created to raise awareness and funding for a horrific genetic disorder called epidermolysis bullosa or EB. Please take the time to look at these products, purchase what you like, wear them with pride and tell everyone you know about EB.
EB is a group of diseases characterized by blister formation after minor trauma to the skin. This family of disorders, most of which are inherited, range in severity from mild to the severely disabling and life-threatening diseases of the skin. This rare genetic disorder affects all ethnic and racial groups. Estimates indicate that as many as 100,000 Americans suffer from some form of EB. People born with EB lack anchors that hold the layers of their skin together. As a consequence, any activity that rubs or causes pressure produces a painful sore akin to a second-degree burn in patients with the Recessive Dystrophic form. While many forms of EB are mild, some are not. One form of EB is lethal in the first weeks or months of life. Some are mutilating over time. Infection is a serious, ongoing concern. As if the diagnosis is not heartbreaking enough, no treatment for EB has been effective. Parents have coped by protecting the child's skin with gauze and ointments to prevent and protect the wounds and healthy skin-something that HMOs refuse to pay for and can cost a family up to several thousand dollars a month. I feel personally invested in this because my niece was born with EB last April and has endured more pain and hospitalization in her short life than most of us will ever even think about enduring. I would like to raise awarness about EB because most people, even doctors have never heard of this terrible disorder. Funding will go towards EB Research efforts so that one day there might be a cure and no more innocent children have to live in pain of this condition. |
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