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UnknownLoser
Poltergeist
 
USA
306 Posts |
 Posted - 06 July 2005 : 10:00:54 PM
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EB - Epidermolysis Bullosa - is a genetic condition where the skin breaks at the slightest touch, causing painful, open blisters and wounds. EB can mean a life of extreme pain, disability and, at its worst it is fatal in infancy. People with severe EB are likely to contract a fatal skin cancer. DebRA provides specialist EB nursing, funds extensive medical research and provides counselling, welfare, respite and advocacy. Jonny agreed to make 'The Boy Whose Skin Fell Off' so as to make EB recognised and raise money to find a cure.
As a result of the documentary, £500,000 has already been raised. DebRA has been able to kick start a long term research programme and may only be three years away from first human clinical trials.
Dude, that was weird. It was about this guy who was 35 but he looked 12 and he had barely any skin. He was always in bandages and stuff. His mom even said that if she knew he had this diease she would have aborted him, "People just don't understand what children with this condition go through. All the pain, and suffering, and struggles."
In the end he died and had this weird funeral. And they played a song by queen. It was on the discovery health channel and was about an hour long.
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The Boy Whose Skin Fell Off.
