Sohana Collins has never known a day without pain. The 11-year-old has a rare genetic disorder that means her skin blisters and tears at the slightest friction.
It also affects her internal skin, which means her mouth and oesophagus blister. This makes swallowing difficult and eating painful – her food has to be liquidised. The condition is caused by the lack of a protein that holds the skin together.
About 8,000 people in the UK have epidermolysis bullosa (EB).
Sohana has a particularly severe form known as recessive dystrophic epidermolysis bullosa (RDEB), which gets progressively worse. Most patients develop malignant skin cancer before their mid-30s.
I have met Sohana several times over recent months and she has always been uncomplaining about her condition, with a great sense of fun.
On one occasion she chatted to me animatedly about the Harry Potter books while she sat on the sofa next to…
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