ACP would like to spread awareness about, Epidermolysis Bullosa (EB), one of the rare skin diseases that affects 3 of our current patients. EB affects 1 in every 20,000 live births in the US, and has symptoms of extremely fragile skin. The skin is susceptible to blisters, sores and tears with only the slightest contact. Internal organs and bodily systems can also be seriously affected by the disease. There is not yet a cure for EB, but the Debra community is working hard to make sure that research is being conducted! Those suffering from EB are called “Butterfly Children” as their skin is as delicate as the as the wings of a butterfly.
Please visit www.debra.org to learn more about Epidermolysis Bullosa. The website provides a plethora of resources to new families affected by EB, medical research, and how to get involved in the EB community!