Epidermolysis Bullosa (or EB) is a grouping of skin diseases in which skin has not been properly keratinized– or, in simpler terms, the skin lacks the necessary proteins to function as a barrier for your body. This results in fragile, easily blistered skin, and painful, bone-deep wounds. Other common symptoms are the thickening of fingernails and toenails, webbed hands and feet, and thick calluses, especially on the heels, hands, and joints.
Have you ever been walking, and noticed the way your pants rub against each other with every step? Annoying, right? Well, for a kid with EB, that annoyance could be life-threatening. When you combine the horrific blisters and infections these children suffer, everyday life quickly becomes a nightmare as they navigate the challenges that friction and heat cause against their delicate skin.
My older sister was born with Epidermolysis Bullosa Simplex-Dowling Meara, or EBSDM. She’s the girl you see in the picture! This was taken shortly after she was born, when my parents were still struggling to take care of such a delicate child. Because it was important to maintain the integrity of her skin (the most important organ in defending against infection), they carefully bandaged her on a daily basis. The care was much like the burn unit would use on a burn victim. One of the most important resources they had in wound care was the help of other more experienced EB parents through online groups.
The life expectancy of a child born with EB varies based on the specific type; however, on average, children with visible symptoms at birth do not survive past infancy. My sister is now 18 and although she still struggles with maintaining her skin’s health, she lives a happy life and is well-loved not only by us but by everyone she meets. She’s a fighter– bravery and
persistence is what shapes a hero, and by all definitions, that’s what she is.
Current research focuses on changing the keratin makeup of the skin– specifically supplementing whatever is lacking in a patient with EB. Children with this disease are called Butterfly Children, and each and every day they continue to fight is a miracle.
If you’re interested in learning more or donating to kids with Epidermolysis Bullosa, check out https://www.debra.org/https://www.debra.org/
