“I’m Sohana. I like singing, writing stories and poems and lots of other fun things. I’m 12 and I want to be an author when I grow up.
I love the #EBtonguetwister challenge! It’s so funny to watch people trying to say tongue twisters without starting to laugh or getting cross with themselves.
I have Epidermolysis Bullosa. Words that are hard to say and even harder to live with. Imagine your skin is covered with painful burns that don’t heal. That’s what EB feels like.
It’s not just me. There are 8,000 children and adults in the UK who have EB. Some of us will go on to develop skin cancers because our skin doesn’t work properly.
There’s no cure, but I’ve met lots of scientists who are working to find one. Their research costs money, so some grown-ups who know me and others like me -including my mum and dad -set up the Sohana Research Fund.
Please make me laugh by taking on the EB tongue twister challenge and help the researchers stop the pain of EB”
“ There is only one thing in my life that I hate and that is EB. I have never had a day with no pain and it is almost torture to watch people do things that I know I can’t ”
Take your skin for granted? Read on to find out about the little known condition with the long name