WHAT IS EB?
"the worst disease you've never heard of"
Epidermolysis Bullosa, or EB, is a rare genetic skin disorder that causes the skin to blister or slough off at the slightest amount of friction. People with EB are missing, or have a deficiency in, the protein that holds the layers of skin together. Therefore, the slightest touch - wearing a shirt, rubbing an eye, being picked up incorrectly - causes open wounds all over the body. There is no cure.
The only treatment for EB is preventative bandaging and wound care. Many children are wrapped in bandages from neck to toe 24/7 and endure extremely painful baths and dressing changes every day or every other day. Many EB orphans do not have access to the specialized bandages and life-saving medical supplies that they are in desperate need of. Oftentimes, orphans with EB will be negelcted and left untouched and unloved due to caregiver fear of causing blisters. This may result in developmental trauma, malnutrition, infection, or even death.