What is Epidermolysis Bullosa (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.
Try to imagine a child with painful wounds similar to burns covering most of his or her body. Unlike burns these wounds never go away. This child can never ride a bike, skate, or participate in sports because the normal play of children causes chronic sores. Wounds may cover up to 75 percent of the child's body. Imagine a diet of only liquids or soft foods because blistering and scarring occur in the mouth and esophagus. Scarring also causes the fingers and toes to fuse, leaving deformities which severely limit function. Imagine a life tied to hospitals for wound treatment, blood transfusions, biopsies and surgeries. The eyes often blister preventing sight for days. Chronic anemia reduces energy and growth is retarded. There is little hope for life beyond 30 years.
History of the EB Medical Research Foundation
The EB Medical Research Foundation was established in 1991 by Gary and Lynn Fechser Anderson at the request of Dr. Eugene A. Bauer, then Professor and Chairman of the Department of Dermatology at the Stanford University School of Medicine. His research team was making exciting progress in their study of EB but needed additional funding to realize their goals.
The Andersons lost two children, Chuck and Christine, to epidermolysis bullosa. Both children suffered deformities of the hands and feet, chronic anemia, malnutrition, and growth retardation. Neither child ever weighed more than 84 lbs. The worst part of the disease was the constant pain. Near the end of their lives, they suffered as much as 75 percent of their bodies in open wounds. Relief came only when they were sedated to the point of sleep. Chuck died at age 27 of skin cancer, another side effect of the disease, and Christine died of heart failure at age 14.
The EBMRF is unique in that the Foundation pays no salaries. All work, including executive, legal, accounting, development and administrative, is done on a volunteer basis. It is the goal of the Foundation to keep operating costs at less that 1% of incoming donations so that a full 99% of contributions can go directly to the research program.