Epidermolysis bullosa (EB) is a disorder characterized by blistering of the skin.
It also affects all the body’s mucous membranes, so while the blisters may be visible, the person’s lips, tongue, mouth, and esophagus are also compromised. It affects approximately 12,000 people in the United States, most of whom are children. In fact, their skin is so fragile, they are known as “Butterfly Children.”
Any type of friction can cause blisters to form, so parents caring for a child with EB have to be very careful choosing clothing that might cause the least amount of friction.
EB is caused by a genetic flaw that prevents the body from producing a very important protein called “collagen 7.”
The condition is—more often than not—painful, because the tiniest amount of friction or physical trauma can cause the skin to tear and blister. Many children with the most severe form succumb to opportunistic infections within the first year of life, including blood sepsis and other life-threatening complications over the course of their lives.
Wound care and pain management are crucial parts of caring for a child with EB.
Fortunately, research is ongoing toward developing new treatments, and hopefully one day a cure. But for now, improved treatments are allowing Butterfly Children to live well into adulthood.
If you are in need of help or resources to care for a loved one, contact debra.org. This non-profit organization administers the Wound Care Distribution program, which can be reached via email at [email protected].