Exeter sun-allergy boy's life 'transformed' by UV filters

http://www.bbc.co.uk/news/uk-england-devon-22957289

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When six-year-old Jack Lavers-Mason developed a rash and blisters all over his body while on holiday in Cornwall, his parents had no idea what was wrong.

"Nobody knew what it was," said his mother, Karen Lawrence. "Doctors thought it might be skin allergies, washing powder, chicken pox. It was so frightening."

No-one considered the problem might be that Jack has an allergy to the sun's ultraviolet (UV) rays.

It was not just the skin reaction, but the pain Jack, from Exeter, felt when he was exposed to the sun that made it so difficult for him to deal with.

"In the front room he used to close all the curtains, be like a hermit really," said Ms Lawrence.

"He used to never come into the conservatory, with light coming in from every angle."

It was not until nearly two years later that Jack was diagnosed with hydroa vacciniforme, a condition that affects about one in 300,000 people in the UK.

After a short exposure to sunlight, a "tingling discomfort" develops in the skin with lumps and blisters then appearing, said Nina Goad, from the British Association of Dermatologists - which classes the condition as an allergy.

Now he has the diagnosis, Jack knows he must use factor-50 sun cream every day and always wear a hat, gloves and sunglasses, when he is outside.

His condition has also prompted the fitting of UV filters on windows at home, in the family car and, crucially, on windows at his school.

Ms Lawrence said it was Jack's current consultant in Cardiff who suggested fitting the filters could help.

She said: "First, we put them in the car and Jack stopped being sick on short journeys and reacting to the rays and we then added them to the house.

"He's now like a normal little boy playing with his sister.

"He used to say he was safe at home but not at school because it didn't have UV filters," Ms Lawrence said.

But now Jack has another "safe place" after his primary school, St David's in Exeter, paid about £1,200 for the filters to be fitted to his current classroom, the one he will be moving to in September and in the school reception and main hall.

Head teacher Francesca Brinicombe said the school paid for the filters from money provided for Jack's care by the local authority and by using the school's budget.

Mrs Brinicombe said: "Once the parents found out how much money the filters would cost, they worked really hard to raise funds and pay the school back.

"Eventually, we plan to have the whole school fitted with UV filters so all areas will be safe places for Jack.

"It's meant less consideration needs to be placed on where Jack is sitting within the classroom and he doesn't need quite so much individual attention to make sure he has the care he needs."

Jack said: "Before the filters, I was staying away from the windows.

"I feel happier and safer that the filters are there."

'Toughen-up'

Ms Goad said the cause of the condition was unknown, but it is clear it is not contagious.

"The sun-sensitivity is usually to long wavelength ultraviolet radiation," she said. "It is unclear how this causes the skin problems.

Ms Goad added wearing protective clothing and using sun cream could help to protect the skin.

"Some patients may find a desensitisation course of artificial light helpful to 'toughen-up' the skin and reduce the likelihood of blisters," she explained.

"It is worth noting that this is not the same as using a commercial sunbed and is medically administered by a doctor."