Epidermoloysis Bullosa

Epidermoloysis Bullosa

In line with its mission to create a better world for children, the Nu Skin Force for Good Foundation™ supports the Epidermolysis Bullosa Medical Research Foundation (EBMRF). EBMRF supports research to find a cure and treatment for Epidermolysis Bullosa.

 

What Is EB?
Epidermolysis bullosa (EB) is a term used to describe a group of skin diseases where the attachment between skin cells is abnormally weak. Mild trauma pulls the skin cells apart, forming small cavities of fluid within the skin; eventually small and large blisters form. This disease derives its name from "epiderm," which means skin; "lysis," which means breakdown; and "bullosa," which means blister or collection of fluid in the skin. EB can be mild, causing blisters to form on the feet after short hikes. It can also be severe, causing blisters and sores to form easily from minimal trauma to the skin; sores can also form inside the mouth, esophagus, and trachea. Children with the most severe form of EB may die an extremely painful death soon after birth because routine handling of a child can strip off large areas of skin. In addition, patients who do survive may have recurrent wounds and infections, and inadequate nutrition due to sores in the mouth or esophagus.

 

Who Is Affected by EB?
EB affects all ethnic and racial groups. It occurs in about one in 20,000 to one in 50,000 births. In recent years, new hope has arisen for families with children who have EB. Researchers have identified several of the absent or incompletely made proteins that act as glue to hold the skin together. Depending on which protein is defective, the disease may be mild or severe. The protein defect is caused by an error in the child's DNA that directs the manufacture of a specific protein. EB is therefore a genetic disease associated with specific genetic mutations. We have no precise therapy for this disease other than avoiding blister-causing trauma and treating blisters and wounds that develop. Gene therapy is the best hope for the future of individuals with EB. Gene therapy involves transferring human genetic material (DNA) into cells. In EB patients, the transferred DNA would allow the skin cells to produce the correct "glue" that the diseased cells normally cannot make.

 

What Research Is Being Done?
Research—funded by the National Institutes of Health, the Epidermolysis Bullosa Medical Research Foundation (EBMRF), and the Nu Skin Force for Good Foundation™—is directed at identifying new strategies for the treatment of EB. These strategies have displayed promise at the preclinical levels in experimental models; however, key scientific challenges remain to be overcome before bringing these efforts forward to the U.S.F.D.A. for initial clinical trials in human patients. Use of these research methods on children with EB will begin once we have completed the necessary tests to confirm safety. Funding from the Nu Skin Force for Good Foundation™ has allowed us to hire additional research scientists to complete the necessary projects in a more rapid and comprehensive manner. The Nu Skin Force for Good Foundation™ has shortened the path to therapy by more than three to five years already.

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