I am in hopes you will go meet them also. I came across them
while "Surfing" for new web-sets. There is a Link at the bottom
of this page and also one on my links page if you would like to add
a Link back to them also. Let me tell you first off, I had NO idea
there was even such a disease as EB, let alone what it was or how
it affects children who suffer from it, and their families. If you go
To the EB web-site you will learn alot more, and see some of these
Beautiful chubby cheeked cherubs! O.k.. I don't know alot, and
what I am Putting here I ummmm Borrowed From Princess Sylvia.
*Blush* Thank You Princess Silvia.
Epidermlysis Bullosa, Or also known as EB, is a term for a group
of inherited disorders of skin manifested by fragility and the for-
mation of bullae (Blisters) at the site of mechanical trauma. It is
caused by defects in any one of the genes that code critical skin
protiens. A number of different types of protiens, including collagen
and keratin, are woven together to give skin its remarkably tough,
yet flexible, properties. When any one of these proteins is bad, the
weave is no good and the skin can literally fall apart with even the
slightest touch, causing painful blistering. There is a great range
of severity depending on the type of EB, from occasional blisters
that cause no appreciable disability, to widespread bulla formation
with severe scarring, marked erosions and contractures. In severe
forms, leisions occur on any mucosal surface, including the mouth
gastrointestinal tract, and trachea, causing malnutrition, anemia
and respiratory compromise.
EB Patients with the worse forms of the condition have skin as
fragile as a butterfly's wing which can blister at the slightest touch,
even from a Mother's cuddle. Normal day-to-day life can cause
constant pain and scarring, which, in the worse forms lead to
eventual disfigurement,disability, and often a very early death. An
estimated 50,000 people in the U.S. have some form of the
condition. This of course DOESN'T include those who have the
worst form of EB, because they invariably die in infancy.
YOU CAN'T CATCH EB, YOU ARE BORN WITH IT!!!!!
~PonyGirL~
