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Boy who is allergic to the sun lives in torment, both from the sun and peers

Health & Science

UK:   A schoolboy with a rare painful allergy to the sun has stopped wearing protective brown cream because he was being racially abused by other children.

James Creag, who suffers from the rare illness Erythropoietic Protoporphyria (EPP) – where sufferers are allergic to the sun – received taunts of “chocolate face” and “you’re coloured” when he wore the cream.

His heartbroken mum Claire Creag, 34 said she was devastated because the specially-made Dundee Reflective Sunscreen was intended to block the light from hitting his face.

For James, even the slightest touch of sun is like having “boiling water poured on him”.

But the 11-year-old, who is in year six at primary school in Manchester, was mocked because of his image when he wore it.

Claire said: “When he had the cream on he was called names – the kind of names a racist would say. I don’t know why.

“It was either ignorance or evilness. People think he’s different so they taunted him. It’s so cruel.

“I hate that people take the mickey out of him. The cream was meant to protect him, but he’s stopped wearing it now.”

Claire told how James, who has a sister Grace, four, who is not affected by the illness, wore a long-sleeved t-shirt, trousers and gloves whatever the weather, so he is best protected from the sun.

“He always wears a hat too,” she said. “He just puts up with it though. He’s so brave and doesn’t let it get him down, even though other kids can play football in the sunshine.”

But James can also be affected when he is inside.

“His school got new lightbulbs in October,” Claire said.

“Immediately he started getting pins and needles and his body swelled up. He was in agony. I was so worried.

“It turned out he was suffering a reaction to the new daylight bulb lights.

“The school put a special coating over them and now he is lots better.”

The family have specially-dimmed windows in their house, but as soon as he is outside James is wrapped up.

Claire, an assistant manager of a breakfast club, said: “He was first diagnosed when he was two.

“He was playing football in the garden with my husband, Daniel.

 “But after half an hour outside, they came running towards me, James screaming.

“He said his hands hurt. They had swollen up so much they looked like boxing gloves. I put them under the cold tap and looked at him.

“His skin was red hot and burning. It was far worse than sunburn –his hands were three times the size.”

The family visited their GP who suggested an allergy to grass.

“He was given steroid tablets to help with the swelling and we were sent away,” Claire said.

“But it kept happening and I took James to the doctors three times that week.

“Painkillers and allergy tablets didn’t help. Every time he was outside, any exposed skin became red raw, his face and hands would swell up.

“He would scream in pain and no sun cream made any difference.”

Eventually James was referred to hospital and diagnosed with the rare condition.

“We were told to wrap him up and use the special cream,” Claire said.

“So, even if it’s overcast, James still wears a hat, scarf and gloves to cover every inch of his skin.

“The Dundee cream is so important. Doctors said his EPP was an inherited condition. Daniel had a variant gene, I had a mutant gene.

“So when I fell pregnant with Grace I was terrified she’d be born with EPP too.

“Luckily she wasn’t.”

Claire added that despite her son's rare condition he is just your "typical 11-year-old lad".

“Even when he is flaring up, he just shrugs his shoulders," she said.

“I admire him.”

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