What is EB?

QUESTION: Doctors have two incredible habits, either they talk in words too
long to understand or they are forever using just initials. Please translate
for me. Just what is EB? A hint: it's a skin disease.
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ANSWER: EB stands for epidermolysis bullosa, (which is too hard for even a
doctor to say and so is abbreviated using the initials), an inherited skin
disease affecting children. Because it occurs rarely, we call it an orphan
disease--a disease that lacks a solid research basis with no cure in sight.
Blisters occur constantly on the skin, erupt and then scar. The most gentle
touch of a hand can cause the blisters. Kids with EB must be constantly
protected from everything in the world. Just as we keep babies away from
things that will hurt, everything can hurt the child with EB.
It has its varieties: EB simplex occurs at birth, it is nonscarring, and
may affect nails and mucous membranes. What is heartening in this form of the
disease is that the patient improves with age. Junctional EB is more serious.
It too occurs at birth with blistering, but also produces a tightening and
thinning of the skin. In its severe forms it is a killer through infection or
blistering of the GI tract, kidney, or bladder within the first two months of
life. Dystrophic EB causes blistering in areas of the body where there is
friction: hands, feet, knees. Each of these varieties has a recessive or
dominant form, depending upon the genetic inheritance.
As we said earlier, it is a disease without a cure and treatment methods
are cloudy. Skin grafts as in burn victims have sometimes been helpful. Some
pharmacologic approaches have been tried. Nursing therapy is at the core of
EB treatment, involving the day-to-day decisions about just what can touch
these kids' skin without further harm.