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For two years Ben Ridings endured the taunts of fellow pupils over his unsightly — and uncomfortable — condition, which doctors initially diagnosed as eczema.
Now he has been told that he suffers from a rare condition called actinic prurigo, an allergic reaction to sunlight.
Ben, from Teignmouth, in Devon, can venture out only if he is covered in protective clothing and is smeared with sunblock. He has to be kept inside between 11am and 3pm, and his parents, Eddie and Terri Ridings, have arranged to teach him at home.
Even at night he suffers discomfort. He has to wear a mask and three sets of pyjamas — two dry and one wet — to keep his skin moist. He has socks on his hands to stop himself scratching his itchy blisters in his sleep.
It was only because of his GP’s chance meeting with another doctor, who offered the family an alternative explanation to eczema, that the cause of his condition was identified. Ben underwent tests at the University Hospital of Wales, Cardiff, which confirmed the rare sunlight allergy two weeks ago. The diagnosis was a relief to Ben because he thought that it was his own fault that his skin was painful.
His mother said: “He thought it was because he had been naughty, but now he can understand that it is not his fault and it means we know how to treat it.”
However, the diagnosis has not stopped the taunts and shocked reactions to Ben’s appearance. Mrs Ridings said: “Some parents scoop their children away when they see Ben — or worse, they think that I’ve burnt him.
“Ben’s self-esteem has taken a battering. He doesn’t like to see himself in the mirror and will often have temper tantrums because of the physical pain and frustration. For a while he became very reclusive and did not want to go to school.
“He even said that he should throw himself from a bridge. He is normally a very happy, bright lad and it was horrible to hear him talk like that.”
Ben’s parents are trying to find out more about the illness and the prospects of his condition improving.
Mr Ridings has given up work to tutor his son at home in the afternoons. Frances Moule, the head teacher of Shaldon Primary, where Ben attends lessons up to 11am, said that the school was coming to terms with Ben’s condition. “We are now hoping that Devon County Council will pay for a dedicated member of staff to supervise Ben,” she said. “But his schoolmates and staff have been hugely supportive. Everyone realises what an extremely serious condition he has got.”
Genetic link to Native Americans
TESTS have shown that Ben Ridings has inherited a gene unique to North American Indians that causes actinic prurigo.
Hospital tests in Cardiff have confirmed that he has inherited the gene, particularly common among Native Americans and passed through the female line.
His father, Eddie Ridings, said: “We don’t know which relative was an American Indian. We’re looking into it at the moment. But Ben has this rare gene.”
Many sufferers, like Ben, do not immediately associate their symptoms with sunlight: even a brief exposure of 15 minutes can trigger a reaction some hours or days later. Some have problems only in summer, when sunlight is at its strongest.
The cause of the reaction is unknown but doctors believe that sunlight causes changes in the skin that trigger a reaction by the immune system.
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