Here is a link to another article about a child with EB (same form as Sam's). Dr. Jakub Tolar gave a great description of how to explain what EB is. EB is so rare it is sometimes hard to explain to others exactly what is wrong with the skin, this is a simple way to explain it.
“(Collagen) is like a glue,” Dr. Jakub Tolar, director of the University of Minnesota Stem Cell Institute and an associate professor in the department of pediatrics at UM, told FoxNews.com. “We have several layers in the skin, and the two main layers – the dermis and the epidermis – are literally glued together like Velcro with loops of this collagen. If you don’t have it, you will lose the surface of the skin, and that’s what these kids have.”
What is EB?
WHAT IS EB?
Epidermolysis Bullosa is a painful, life threatening disease of the skin. Sammy has the form called Recessive Dystrophic. In his case the bottom layer of his skin does not adhere properly to the other layers because the collagen 7 protein involved in this function is either missing or mis-shapen.
Because of this genetic defect even slight friction can cause several layers of skin to rip away creating horrific, painful wounds. Normal daily activities can cause blistering or tearing of the skin. Currently there is no cure for EB, only wound management as treatment. Despite the challenges Sam faces with EB, he displays amazing strength every day and inspires those around him.