Sophie - EB

Information about Epidermolysis Bullosa

What is a Epidermolysis Bullosa?

• EB affects 2 out of every 100,000 live births in the U.S. today. EB is a rare genetically based disease characterized by chronic, painful blistering. The skin and mucous membranes are so fragile that the slightest touch can cause severe blistering – inside and outside the body. Present at birth, EB does not discriminate as to race, ethnic origin or sex and many times appears spontaneously due to a mutant gene. At present there is no cure and no treatment except daily wound care and bandaging. Recent breakthroughs in gene research hold real promise for the future.What Type of EB Does Sophie Have?

• There are three main forms of inherited EB: EB Simplex, Junctional EB and Dystrophic EB. These different subtypes are defined by the depth of blister location within the skin layers.

  • Sophie's type is: Recessive Dystrophic EB (non Hallopeau Siemens)

EB Organizations

• DebRA - Dystrophic Epidermolysis Bullosa Research Association of America

  • DebRA International

• EB Medical Research Foundation

Other EB Links

• EB World

• Through the Eyes of the Patient

• National Epidermolysis Bullosa Registry

• Force for Good Foundation

• Department of Dermatology at Stanford University

• Description of EB from eMedicine