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The bizarre reason this 'vampire' schoolgirl can't go in the sun

Alice Tyson, 11, has suffered with Xeroderma Pigmentosum (XP) since she was a baby, and was diagnosed at three-years-old - and is forced to wear a home-made welders mask whenever she leaves the house.

The incredibly rare disease leaves Alice's body unable to repair UV damage – and means spending just 15 minutes in the daylight could leave her ravaged with skin cancer.

Alice Tyson suffers from Xeroderma Pigmentosum (XP). Photo: Caters
Alice Tyson suffers from Xeroderma Pigmentosum (XP). Photo: Caters

There is no cure, but Alice and her parents Tracey and Neil have fashioned Alice a special 'welder's mask' - a hat fitted with a UV filter sheet that goes over her face.

Alice spends hours every day slathering herself in factor 50 sunblock, intense moisturising creams and a specialist chemotherapy cream - and if she wants to go outside she has to kit up in layers of clothing, sunglasses and a home-made hat and mask, making sure every inch of her skin is covered.

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Tracey, 51, from Carlisle, Cumbria, said: "Alice's body doesn't repair the damage when exposed to UV, like most people – she just damages and damages and damages until she gets skin cancer.

"So she has to stay completely covered up in daylight.

"She always wears a hat with a face shield - a bit like a welding or legionnaires mask with a special UV filter, which I made myself – and long sleeves, trousers or thick tights and gloves all year round.

"If she were to go out on an overcast, cloudy day without any protection – within 20 minutes she'd be bright red and blistering.

"Essentially, she's allergic to daylight – it's a bit like being a vampire."

There is no cure for the disease. Photo: Caters
There is no cure for the disease. Photo: Caters

The family have also fitted special UV-blocking filters onto all the windows in their house and car, and Alice's accommodating primary and new secondary school have done the same.

While Tracey and 54-year-old Neil try to keep Alice's childhood as normal as possible, the condition does limit what she's able to do.

Tracey, a care assistant, said: "When she was little it wasn't too bad, and I thought it would get easier – but as she gets older it only gets harder.

"She does get down at times, and will ask 'why me? Why can't I be normal?' She wants to go outside and play with her friends, but she can't without getting all kitted up first. She's also at the age where she wants to start experimenting with make-up, but all the creams interfere with it. There's no cure, so she'll have to put up with this for the rest of her life."

She must wear a special helmet and suncream to protect her from the sun. Photo: Caters
She must wear a special helmet and suncream to protect her from the sun. Photo: Caters

Alice was born with the condition but doctors didn't pick it up until she was three, after a bout of chicken pox.

Since she was a tot, she has had four operations to remove small cancerous tumours, and made countless trips to see doctors both in Carlisle and London.

Tracey said: "When we were told, we were just gobsmacked. They kept asking if Neil and I were related – I was absolutely mortified. I think a lot of people have XP in countries were incest is quite common – but in the UK it's relatively unheard of. Around one in four million people have the faulty gene, and me and her dad have both got it - we could've won the lottery with those odds.

"When we were first told we thought Alice would never leave the house, and we'd have to live with the curtains and blinds closed forever. It was quite scary, and there was no one near who we could talk to. But I found a support group in Buckinghamshire, and they really helped to reassure me."

Even in overcast conditions, Tyson can get get blisters from the sun within 20 mins. Photo: Caters
Even in overcast conditions, Tyson can get get blisters from the sun within 20 mins. Photo: Caters

Alice now goes through a tedious daily routine that involves caking herself in sun cream every two hours, and moisturising cream every three hours.

She also has to use eye drops three times a day, as well as taking daily hayfever and vitamin D tablets, and spends hours layering up just for a trip to the shops.

Tracey added: "I do feel sorry for her - she just wants to be able to do all the things her friends can do.

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"In a heatwave she absolutely roasts with all her layers on – so often she'll just stay indoors to avoid the heat, which makes her virtually housebound in the summer. The worst thing is going out, when she's got her hat and all her clothes on, with strangers making comments.

"It's horrendous – people will come right up to her face, asking if she's dressed as a beekeeper or an astronaut. It's a struggle to get her to wear everything as it is, then people go and make comments like that. Her face just drops, and I feel like punching them – but I tell her we just have to ignore them."

Alice said: "It's hard to live with - usually on a sunny day it's really hot and it's hard for me to even leave the house. I want to go out and play with my friends, but usually I can't so it really upsets me. But I've got used to wearing the hat and things like that. I try and be happy and enjoy myself - my friends are really good at including me and doing things I can be involved with.

She wears long sleeves, long pants and gloves all year round. Photo: Caters
She wears long sleeves, long pants and gloves all year round. Photo: Caters

"People always ask a lot of questions at first and I didn't know what to say when I started school, but my mum explained and now it's fine. It's easier when people ask questions instead of just staring. I think it's going to harder as I get older - sometimes I'm OK with it and sometimes I'm not, but I try to look at the bright side."

Dr Bob Sarkany, consultant at the XP clinic at St Thomas' Hospital in London, said: "It's a rare disease - there are only 100 people with XP in Britain.

"The genetic problem comes when patients go out in the daylight, even on a cloudy day, as the light contains a small amount of UV. The UV damages the genes inside the cells of the skin and the eye when they're exposed to it. Clearly it's worrying, because of you damage a gene then it doesn't work properly - damage to genes causes cells to behave incorrectly, which causes cancer.

"A DNA repair system repairs damage to cells when we go outside - but the problem is the DNA repair system doesn't work correctly in patients with XP. Some patients experience more immediate affects than others, but all patients are at risk of long term problems such as multiple skin cancers, particularly on face and hands, as they're areas that are more likely to be exposed.

"There's no cure, but there are treatments and that's what we focus on. Patients have to take very extreme light protection measures - like visors, gloves and long sleeves - which can be a very unpleasant and difficult way to live.

"With good light protections and spotting problems early there's no reason patients can't live long lives."

- Hannah Crocker, Caters

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