You joyfully receive your new baby into the world, but quickly make a horrifying discovery: your baby’s skin is not attached correctly to his body and is constantly causing terrible pain to your child.
You were probably not even aware that such a disorder even exists. It’s called epidermolysis bullosa, or EB or short, and it affects around 500,000 people around the globe.
It’s a genetic disorder where a certain protein that keeps the layers of your skin attached to each other is missing. It makes the skin extremely fragile so that even small amounts of rubbing (from an embrace or even wearing clothes) can cause terrible blistering and sores. It affects all racial/ethnic groups and both sexes.
And there’s no cure.
As a result, many children with EB die as infants, though sometimes they make it to early adulthood.
But there’s hope!
There’s a new group called No Baby Blisters, led by Dr. Aaron Tabor, who is inspired by his Christian faith to help. They are raising money to accelerate their “Fast Cure Plan” which is pursuing three promising leads for treatment or cure.