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Woman With Rare Genetic Allergy To UV Light Has To Wear 'Space Helmet'

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Woman With Rare Genetic Allergy To UV Light Has To Wear 'Space Helmet'

A woman with a rare genetic condition which means she is allergic to UV rays has revealed how she has to wear a 'space helmet' to protect her skin.

Fatima Ghazaoui, 28, from Mohammedia in Morocco, was diagnosed with the rare skin condition xeroderma pigmentosum when she was just two years old after her parents noticed freckling of her skin.

Credit: MDWfeatures
Credit: MDWfeatures

For people like Fatima who are living with the condition, they are easily sunburnt even when it is a dull day, suffer with severe freckles and tend to have visible signs of dry skin and skin ageing.

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Due to the risk of sun exposure, Fatima's day starts at night, she rarely goes outside during the day and hasn't been out in daylight for over 20 years without wearing sun protection in the form of gloves and a helmet which she affectionately calls her 'NASA mask'.

Fatima also has to wear SPF 90 sun cream which she has to reapply every hour to ensure she is protected and she has a special UV filter on her windows at home.

Credit: MDWfeatures
Credit: MDWfeatures

Fatima struggled to accept her health condition when she was growing up and she had to stop going to school at the age of 13 because it was deemed too dangerous due to the risk of her skin being exposed to the light.

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At 16, Fatima researched her allergy and discovered that it could result in premature death and whilst this scared her at first, the more she knew about her condition, the stronger she became.

Now, Fatima is passionate about raising awareness of xeroderma pigmentosum and hopes that by sharing her story she can show other sufferers that they can still live a full life.

Fatima usually goes out at night time. Credit: MDWfeatures
Fatima usually goes out at night time. Credit: MDWfeatures

She explained: "Xeroderma pigmentosum is a genetic disease which causes a sensitivity to UV rays and it happens when our skin is exposed to the sun.

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"The sunburn causes redness and may increase the risk of developing skin cancer that needs to be removed via surgery.

"I rarely go out in daylight but if I have to, I must wear what I call a NASA mask as well as gloves to protect myself from sun rays. My day is different from other people's, I spend all day indoors and my day starts at night.

"This disease is very hard to treat but I prefer to stay at home to protect myself from UV damage."

Credit: MDWfeatures
Credit: MDWfeatures
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She went on: "It was a hard journey to get to where I am today, I struggled a lot and it was difficult to accept my health problem.

"My parents never opened up to me about the real danger of my illness as they wanted to protect me but the more I found out about my disease, the stronger I became."

Fatima has had 55 surgeries so far to remove areas of concern on her eyes, tongue, nose and head.

Credit: MDWfeatures
Credit: MDWfeatures
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There is no known cure for xeroderma pigmentosum and according to the NHS, in the UK only 70 percent of xeroderma pigmentosum patients live beyond the age of 40.

She added: "It is so important to me to be able to raise awareness because my disease is rare and unknown so I need to raise awareness so that people will be aware of the danger of this disease in the future.

"I'm very optimistic so I am sure that I can inspire many people to cope with the disease. My family were so supportive, they're always proud of me.

"I want to tell people to live everyday like it's the last no matter what happens, life is short so people should live it fully."

Featured Image Credit: MDWfeatures

Topics: Inspirational, Community, Health

Rebecca Shepherd
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