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Sohana telling us about life with EB
Hi, I’m Sohana, and I have a horrible skin condition called Recessive Dystrophic Epidermolysis Bullosa. I try not to let it get in the way of the things I love doing, like drawing, writing and singing, but there are many things that I can’t do because of EB. There are things that you probably take for granted. Life with EB is painful, difficult, and can sometimes consume the good things, making life a daily battle…
Poppy Gee and living with Epidermolysis Bullosa
HARD TO SAY. HELL TO LIVE WITH.
Cure EB – formerly The Sohana Research Fund
Sohana has lived with Recessive Dystrophic Epidermolysis Bullosa (“RDEB”) since she was born in 2002. That means she has never known even one day without pain. I cannot imagine what that is like, even though I dress her wounds daily – can you?
She amazes us all with her sunny, positive, humorous outlook on life. Her resilience and fighting spirit are obvious to everyone who has contact with her – but what she dreams of most – is a cure.
There are up to 5000 children and adults living with EB in the UK, 500,000 worldwide. RDEB causes blisters and wounds and is like having very severe burns, outside and inside, eventually leading to skin cancer. Currently there is no cure but enormous strides have led us to the brink of gene therapy treatments and cures.
Our name is our mission- to cure EB. We would be grateful for anything you could do to help.
(Founder and Trustee Cure EB)
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