A 16-year-old girl named Sohana Collins suffers from Epidermolysis Bullosa, a rare genetic condition, also known as the butterfly syndrome, which makes her skin bleed and blister.
Sohana, from North London, says it takes about one and a half hours to dress up in the morning as her mother, Sharmila unwraps her bandaged arms, uses surgical needles to prick her blisters before cleansing.
Watch the teenager with butterfly skin
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Sohana told Barcroft TV: “It takes about one and a half hours dressing in the morning and I think it takes longer in the evening because I’m walking around more on my feet. So I get more blisters.”
She struggled throughout her childhood as she couldn’t learn how to ride a bike or climb a tree. But despite this, she has never given up on life. She now has successfully completed her GCSEs.
She says whenever she goes out in public, people would stare at her and ask questions.
She said: “When we are travelling, we got to security when someone said I can’t go on the plane because I am contagious. I am like, ‘No, I am not. It’s genetic.’ I just see the funny side of it because that’s just how I deal with the problem.”
The teenager has helped her parents’ charity raise £5 million towards medical research.
Her mother said: “In the space of time we have been fundraising we have managed to raise over £5 million for EB research, which is good but quite frankly it is not enough.”
“We want to try treat as many people with EB as possible and as quickly as possible so we need to break down some of the barriers and raise awareness of the condition.”
Sohana has a very positive attitude towards life as she says she might be physically different but mentally she is the same. She wants to raise awareness about the condition and raise funds so more people with EB are treated.
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