Epidermolysis Bullosa (pronounced Ep-ee-der-MOL-eh-sis Bull-O-sa, often called "EB") is a family of genetic diseases characterized by the presence of extremely fragile skin that results in the development of recurrent, painful blisters, open sores, and in some forms of the disease, disfiguring scars, disabling musculoskeletal deformities, and internal blistering. EB is not contagious, and intellectual function is not impaired. The National EB Registry has indicated that approximately 12,500 individuals in the United States are presumed to be afflicted with the disease, although some estimates publicized suggest 20-50,000, and others indicate the number may be as high as 100,000. The statistics indicate that, on average, only nine people out of 20 born with EB are living today, which illustrates the deadly reality of this disease! A person with severe EB experiences more pain in one week than the average person does in a lifetime!
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