BBC - Radio 4 - Woman's Hour -Owl Patrol Camp

Helping children with the rare skin condition, XP

After a long grey winter, most of us are looking forward to the prospect of a bit more sun. But for people who suffer from light-sensitive skin disorders the coming of spring can be little short of disaster. Around one in a million children in the UK are born with the condition Xeroderma pigmentosum – or XP – which means their bodies cannot repair cells damaged by ultraviolet light.

They’re 1000 times as likely to develop skin cancers as other people; some also develop mental and neurological problems. Sufferers – who are mostly children, as normal life expectancy is about thirty – must avoid daylight as much as possible. The windows of houses, cars and schools must be protected with special UV resistant film, they must apply extra strong sun lotion every two hours, and wear a face mask and clothing from head to foot when they go outside.

For children this is obviously devastating – they can only play normally outside without protection after dark. But once a year (in February) children suffering from XP or other light sensitive disorders come together – along with their parents and siblings – to a former convent near High Wycombe for the Owl Patrol Camp. This gives them a highly unusual chance to be normal for a weekend, and have a go at activities from trampolining, pony rides or football, mostly taking place after dark.

Caroline Swinburne went along to Owl Patrol, and to find out what a condition like XP means in practice.

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