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Children and Adults with EB
Th "I want the whole
world to see, not the difference,
Cynthia
Kidder
There is a great range
of severity depending of the type EB is rare. One thing to describe its rareness is that a doctor or a nurse can be working a lifetime and never bump into this condition. With modern medical care, some with the medium to worse kinds of EB can live into their thirties. Unfortunately, by this age most will succumb to a particularly aggressive skin cancer (SCC: Squamous Cell Carcinoma) that is somehow touched off by EB. While SCC is notably a very slow moving cancer, on EB patients it is instead a very fast cancer. There are three basic
forms of EB: Upon injury, the simplex's wound is not as deep and severe as the dystrophic's one, but it is more easily obtained. The Children with EB are called "Butterfly Children" because in spite of the extreme fragility of their skin (like a butterfly wing), that blisters at the slightest touch, they take on life and light it up with their bravery. -------------------------------------------------------------------------------- Don't Be Afraid To Hug Me Don't be afraid to hug
me. Written By Cristina Perez in memory of Jennifer Johnson. -------------------------------------------------------------------------------- The Children Children with EB live a tortured existence of daily pain and, in the more severe forms, such as Recessive Dystrophic, frequent medical procedures, with little hope of recovery or normalcy. Yet we must always remind ourselves that inside the disfigured body lives a child who wants to enjoy all the things in life a normal child enjoys, to play, to laugh, and to learn, a child with all the potential and need for joy of a normal child. Photos The photos of these brave children and adults (91 at the last update) are grouped together depending on the form of EB they have (except for the adult page). A description of each form of EB is listed under each page and/or picture: Simplex
-------------------------------------------------------------------------------- Junctional
Dominant
Dystrophic
Recessive
Dystrophic
Adults with
EB -------------------------------------------------------------------------------- If you or your child has EB and you would like his or
her photo in these pages, please contact us
with the following information: Want to link to us?
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EB Info World was Created on 11/20/1997 - Background Ribbon Graphic by Dominic
Gionfriddo
Copyright 2008 Sleeping Angel Creations & Services All Rights Reserved - Disclaimer |
utterfly Children is a registered trade mark of DEBRA
UK
The Butterfly Children
are sufferers of Epidermolysis Bullosa. They have skin as fragile as a
butterflys wing which can blister at the slightest touch even from a
mothers cuddle. 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.
of EB,
from occasional blisters that cause no appreciable disability to
widespread blister formation with severe scarring, marked erosions, and
contractures. In severe forms, lesions occur on any mucosal surface,
including the mouth, gastrointestinal tract, and trachea, causing
malnutrition, anemia and respiratory compromise.
9/20/2008 
