Medical Definition of EB

Epidermolysis Bullosa is a rare disorder primarily characterized by severe blistering of the skin. But EB is much more than a skin disorder. It affects all the mucous membranes including the lips, mouth, tongue and esophagus, as well as the cornea of the eyes. Patients with EB may suffer chronic open wounds covering large surfaces of the body. They suffer malnutrition, chronic inflammation, persistent infections, anemia, digestion problems, Alopecia (hair loss), extreme itching, disfiguration of the hands and extremities, cancer and many other serious maladies. This disorder can be quite severe and even lethal in some forms. To learn about this genetic skin disorder through the eyes of a patient with EB, click here (www.ebpatient.com)

EB should no longer be known as just a “child’s disease.” With technology and modern medicine, people with severe forms of EB are surviving well into their adult years. As adults they face new challenges and have different needs. Our goal in creating USeb is to address such needs on an individual and group level in order to make self-reliance a reality.