Alice Tyson, 11, has suffered with Xeroderma Pigmentosum since she was a baby. She is forced to wear a mask whenever she leaves the house
A schoolgirl who suffers from a rare disease that leaves her allergic to daylight is forced to wear a mask whenever she leaves the house – to protect her from cancer.
Alice Tyson, 11, has suffered with Xeroderma Pigmentosum (XP) since she was a baby, and was diagnosed at three years old.
As a result, she has to make sure every inch of her skin is covered every time she goes outside.
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.
And the young girl from Carlisle spends hours every day smearing herself in factor 50 sunscreen, intense moisturising creams and a specialist chemotherapy oil just to protect her.
There is no cure, but her parents Tracey, 51 and Neil, 54 created her a special hat fitted with a UV filter sheet that goes over her face.
Her mother said her daughter’s allergy to daylight was almost vampire-like.
Mrs Tyson said: ‘Alice’s body doesn’t damage the repair 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.’
The family have fitted special UV-blocking filters onto all the windows in their house and car, and Alice’s new secondary school have done the same.
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While her parents try to keep Alice’s childhood as normal as possible, the condition does limit what she’s able to do.
The 11-year-old also has to use eye drops three times a day, as well as taking daily hayfever and vitamin D tablets.
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.
‘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 get harder as I get older – sometimes I’m OK with it and sometimes I’m not, but I try to look on the bright side.’
Her mother said she always wants to go outside and play with her friends but she can’t without getting all kitted up first.
Mrs Tyson, a care assistant, thought the condition would become easier to manage as her daughter grew older – but she said it only gets harder.
Alice spends hours every day smearing herself in factor 50 sunblock, intense moisturising creams and a specialist chemotherapy cream. She was diagnosed at three years old
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 young, she has had four operations to remove small cancerous tumours, and made countless trips to see doctors both in Carlisle and London.
XERODERMA PIGMENTOSUM: AN EXTREMELY RARE GENETIC ILLNESS
Xeroderma Pigmentosum (XP) is a life-altering genetic condition characterised by an extreme sensitivity to ultraviolet (UV) rays.
UV is in sunlight, most artificial lighting and even lightning. Unless patients with XP are protected from UV, their skin and eyes may be severely damaged and this can lead to cancer.
XP is an extremely rare hereditary condition with less than 100 cases in the UK and 2,000 worldwide.
About 30 per cent of people with XP also develop neurological abnormalities which can include hearing loss and loss of mobility.
There is no cure for XP, but much can be done to prevent and treat some of the problems it causes.
These include protection from UV, including total daylight avoidance, specialised clothing and sunscreens.
People with XP must also undergo frequent skin, eye and neurological examinations and have prompt removal of cancerous tissue.
Source: Teddington Trust
Her parents were mortified when they were told of Alice’s condition as doctors kept asking if they were related.
But despite struggling to find people to talk to about her daughter’s condition, she managed to find a support group in Buckinghamshire who helped to reassure her.
Mrs Tyson said: ‘I think a lot of people have XP in countries where 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 father 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.
Mrs Tyson said her daughter often has to stay indoors to avoid a heatwave, as Alice tends to become housebound during the summer.
But she gets fed up with the endless comments from strangers when they see her daughter – to the point where she wants to punch them.
Mrs Tyson said: ‘I do feel sorry for her – she just wants to be able to do all the things her friends can do.
‘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.
‘She’s also at the age where she wants to start experimenting with make-up, but all the creams interfere with it.’
There is no cure, but her parents Tracey, 51 and Neil, 54 have fitted special UV-blocking filters onto all the windows in their house and car. Her primary and new secondary school have done the same
While her parents try to keep Alice’s childhood as normal as possible, the condition does limit what she’s able to do. Since she was young, she has had four operations to remove small cancerous tumours, and made countless trips to see doctors both in Carlisle and London
Alice also has to use eye drops three times a day, as well as taking daily hayfever and vitamin D tablets
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.’