Actor Tom Conti has launched a fundraising campaign to help sufferers of a little-known genetic condition which leaves children's skin as fragile as a butterfly's wing.

About 5,000 people in the UK are affected by Epidermolysis Bullosa - an incurable disease which causes the skin to blister and disintegrate at a touch and can be fatal in small children.

For some sufferers, even the simple act of swallowing is impossible because of blistering in the throat. Normal daily activity causes pain and scarring which leads to increasing disfigurement and disability.

In every form of the condition but one, the symptoms get worse as the sufferer gets older.

Appeal

Mr Conti, the star of the blockbuster film `Shirley Valentine', spearheaded an appeal to raise £5m for the EB charity DEBRA.

He joined families of sufferers and campaigners in Brentford, Middlesex, to launch the appeal called "The Butterfly Children".

Research

Experts believe that, if £5m was invested in research over the next five to six years, effective treatments could be found which would save countless children's lives.

Studies have identified the genes responsible for each of the 29 types of EB, but now the charity wants to use that information to improve treatment for sufferers.

A spokesperson for the charity said: "In effect the cost of two miles of motorway would end the misery and torture of one of the most distressing and painful conditions a child could ever be born with, for current and future babies born with EB."

Self-Help

Currently there is no government funding into the condition.

DEBRA, Dystrophic Epidermolysis Bullosa Research Association, was set up in 1978 as a self-help group for people and families with EB.

Over the years, its work has expanded and it now funds medical research into the condition, provides specialist care and welfare and educates the general public and health care professions about EB.
 

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