EB – Epidermolysis Bullosa is a rare genetic condition casing a person skin to be very delicate. where even a simple seem can cause blistering to occur. Those affected must have their entire body continuously wrapped in bandages. But researchers at the University of Minnesota have discovered a cure.
Physicians at the University of Minnesota and University of Minnesota Childrens Hospital, Fairview have set the path to a cure for a young boys fatal genetic skin disease, recessive dystrophic epidermolysis bullosa (RDEB), by using a cord blood and bone marrow transplant. Nate Liao, a 25-month-old from Clarksburg, New Jersey, underwent the experimental therapy in October 2007.
What is EB?
Epidermolysis Bullosa (EB) is a rare genetic skin disorder that causes the skin to be so fragile that the slightest friction can cause severe blistering – inside and outside the body. It is present in 1 out of every 50,000 live births in the US. It can occur in every racial and ethnic group, and affects both sexes equally. There is currently no cure, and the research is on-going. Severe forms of EB cause patients to live with constant pain and scarring. The worst forms of EB lead to eventual disfigurement, disability and often early death. There are many patients who are diagnosed with milder forms, which, while they can be extremely difficult to live with, are non-disfiguring and non-lethal.
What is DebRA of America?
The Dystrophic Epidermolysis Bullosa Research Association of America (DebRA), was founded over 30 years ago in New York City and is the only national nonprofit organization dedicated to funding research and providing supportive services and programs for those with Epidermolysis Bullosa (EB) — The Worst Disease You’ve Never Heard Of.™ Some of the programs and services we provide are; wound care supplies shipped directly to patients, an EB Nurse Educator, education, new family packages, and money for research towards finding a cure for EB. There is currently no cure, and the research is on-going. Treatment is supportive and includes daily wound care, bandaging, and pain management. For more information, visit debra.org
DebRA of America, Inc.
16 East 41st Street, 3rd Floor
New York, NY 10017
p: 212-868-1573
f: 212-868-9296
debra.org
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