The daily bath requires pain medication, yet still causes tears as water meets open sores. Here is an infant with blisters on the face and other parts of the body. Imagine a diet of only liquids or soft foods because blistering and scarring occur in the esophagus. Scarring also causes the fingers and toes to fuse, leaving deformities which severely limit function. The eyeballs may blister.
Chronic anemia causes reduced energy and growth is retarded.
There is little hope for life beyond 30 years. This describes the life of a child born with severe forms epidermolysis bullosa. This rare genetic disorder affects all ethnic and racial groups. 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 , Stanford School of Medicine. The Andersons have lost two children, Chuck and Christine, to epidermolysis bullosa.