6 years ago102 views
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They are the forgotten few - the Russian children suffering from a rare and incurable genetic disease. Up to now it has been all but ignored by the medical establishment, and mothers of young sufferers have been left with very little help. Lisa is one of the children with this rare genetic condition known as epidermolysis bullosa or EB. It makes her skin as thin as a butterfly's wing -- a slight touch or a hug can cause painful blistering that takes a long time to heal, leaving the skin even more fragile. Around the world sufferers like Lisa are known as "butterfly children". However, in Russia it is as if they do not exist. "The doctors simply don't know of the disease, and when you tell them what it is, even if they might have heard of it, they don't know how to deal with it," says Irina Komanova, Lisa's mother.
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