WHAT IS EPIDERMOLYSIS BULLOSA?
EB is a group of genetic disorders characterized by blister formation after minor trauma to the skin. This family of disorders range in severity from mild to the severely disabling and life-threatening diseases of the skin. Estimates indicate that as many as 100,000 Americans suffer from some form of EB. Try to imagine a person with painful wounds similar to burns covering most of his or her body. Unlike burns, these wounds never go away. For EB patients, riding a bike, walking or participating in sports is difficult because normal activities cause chronic blistering. Wounds may cover up to 75 percent of the 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 depletes energy and limits proper growth. There is little hope for life beyond 30 years. Children with EB are often referred to as Butterfly Children because their skin is as fragile as a butterfly’s wings.
This describes the life of a child born with the severe forms of Epidermolysis Bullosa.
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Huge FDA News***
In May 2023, the US Food and Drug Administration (FDA) approved Krystal Biotech’s Vyjuvek (beremagene geperpavec), a topical gene therapy drug, for wound treatment in dystrophic epidermolysis bullosa with COL7A1 mutations. The EBMRF was instrumental in providing seed money for this research and the outcome is a giant step forward for EB patients.
For a full discussion, please see Treatment.
Additionally, A topical gel, Filsuvez (birch triterpenes), was approved by the FDA in December 2023 for treatment of wounds in patients aged 6 months and older with junctional and dystrophic epidermolysis bullosa.
EB Awareness Week October 25-31
