Epidermolysis Bullosa, EB, is a rare connective tissue disorder that affects 1 in 20,000 live births in the Unites States. Those affected lack the proteins that prevent the skin layers from acting independently from one another resulting in extreme fragility of the skin. This means that the slightest of touches, even a hug can cause excruciatingly painful blisters and wounds. These wounds are very susceptible to infections which can often times be lethal. There are children and adults who face the challenges of EB every day. The slightest amount of friction, even the softest of touches can cause severe and excruciatingly painful blisters. Many children do not make it to their first birthday and those who survive, spend their days bandaged from head to toe, full of constant pain and suffering the many complications that come with EB.
Despite any amount of care, wounds still occur and with the wounds comes scarring. This scarring can cause deformities in the hands and feet as the skin begins to fuse together often resulting in a clubbing effect. Another complication as a result of the chronic damage to the skin is cancer, which is typically fatal in these cases.
Today, there is NO treatment or cure. But there is very real hope in promising research and clinical trials being conducted at esteemed institutions such as the University of Minnesota team led by Dr. Jakub Tolar. His tremendous progress in pioneering safer BMTs has been life altering for children affected by EB, and has potentially broader implications for others suffering genetic disorders or diseases like Leukemia.
This research is vital and it is a privilege to have the opportunity to support Dr. Tolar and his team. Please donate in support of a cure to end EB.
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