Epidermolysis
Bullosa
is a rare genetic skin disorder. One thing to describe its rareness
is that a doctor or a nurse can be working a lifetime and never bump
into this condition. It is estimated that as many as 50,000 Americans,
mostly kids, have some form of EB. Normal day-to-day life can cause
constant pain and scarring, which, in the worse forms, leads to eventual
disfigurement, disability and often early death. Two forms are deadly
to the newborn (Junctional-Herlitz and Pyloric Atresia), while many
patients with the Recessive Dystrophic forms can live into their thirties.
Unfortunately, by this age most will succumb to a particularly aggressive
skin cancer (Squamous Cell Carcinoma) that is somehow touched off by
EB. All other forms, albeit not particularly life-threatening, are
painful, and patients cannot do many of the things we all take for
granted.
Is
there hope for EB? Yes, there is. With your support of the EBMRF
(Epidermolysis Bullosa Medical Research Foundation) Gene therapy is not only a dream, but can become a reality.
:: This is the official website
for the Southern and Northern California Support Groups ::
Our support groups are open to
anyone who suffers from EB, parents and patients alike, and also friends,
relatives, caretakers of someone with EB, physicians, dermatologists,
nurses, and any medical professional who has an interest in EB.
