HELP FIND A CURE For Epidermolysis Bullosa
The Worst Disease You
Have Never Heard Of…
It is our 2010 mission to support DebRA International. DebRA International is a non-profit organization dedicated to promoting both research, to find new treatments and a cure for Epidermolysis Bullosa (EB), as well as providing educational and clinical support for EB affected families, and medical practitioners who may find they have a patient with EB, but no real practical experience of how to care for them.
EB is a rare genetic disease characterized by the presence of extremely fragile skin and recurrent blister formation, resulting from minor mechanical friction or trauma. In severe EB, daily bandage changing is required to treat the many open wounds and blisters. EB can also affect other areas such as the eyes and internally, the mouth, esophagus, stomach, intestines, upper airway, bladder, and genitals. This condition is not contagious. An estimated 1 out of every 50,000 live births are affected with some type of EB. The disorder occurs in every racial and ethnic group throughout the world and affects both sexes equally.
There is no known cure for this horrible disease that affects so many of our children. After learning of the disorder from a friend, Niki Higgins decided to help raise awareness for EB. She is now a member of the Debra International Global Appeals Group.
Please be a part of our charitable mission to find a cure.
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Compliments of Maisy’s family and DebRA, All images copyright Leo Wilkinson Photography.