A woman with a rare genetic condition has shared how she wears a mask that looks like a ‘space helmet’ to protect her skin from harmful UV rays, and has not left the house without it in 20 years.
At just two years old, Fatima Ghazaoui, 28, from Mohammedia, Morocco, was diagnosed with the rare skin condition Xeroderma pigmentosum, after her parents noticed severe skin sin.
The genetic condition leaves the skin unable to repair itself after exposure to ultraviolet radiation, which is present in daylight and some artificial light, and means that a person is more likely to develop dangerous skin cancers or eyes.
Fatima has not come out in daylight for over 20 years without wearing sunscreen in the form of gloves and a helmet, which she affectionately calls her “NASA mask,” and most of all begins her days at nightfall.
Fatima Ghazaoui, 28, from Mohammedia, Morocco, was diagnosed with the rare xeroderma pigmentosum skin condition at age two and is now wearing a ‘space helmet’ to protect her skin.
Fatima has not been in daylight for over 20 years without wearing sunscreen in the form of gloves and a helmet, which she affectionately calls her “NASA mask.”
“I rarely go out in daylight, but if I have to,” says Fatima, “I must wear what I call a NASA mask and gloves to protect myself from the sun’s rays.
“My day is different from other people’s, I spend all day indoors and my day begins at night.”
The condition means Fatima burns easily in the sun, even on a soft or cloudy day, and suffers from severe freckles, while having visible signs of dry skin and aging skin.
Your sunburn causes redness and may increase the risk of developing skin cancers that must be removed by surgery.
“I was diagnosed with my disease when I was two years old,” said Fatima.
“In fact, I went to the doctor, but he was unable to diagnose my health problem, then I went to another doctor and I was finally diagnosed with Xeroderma pigmentosum.”
Due to the risk of sun exposure, Fatima day begins at night, rarely going outside during the day.
She says she hasn’t been in daylight for over 20 years without wearing sunscreen. Fatima also needs to use SPF 90 sunscreen, which she must reapply every hour to make sure it’s protected and has a special UV filter on the windows in her home.
The condition means Fatima burns easily in the sun, even on a soft or cloudy day, and suffers from severe freckles, while having visible signs of dry skin and aging skin.
Fatima had trouble accepting her health when she was little and had to stop going to school at age 13.
Due to the risk of sun exposure, Fatima day begins at night, rarely going outside during the day.
Fatima struggled to accept her health condition when she was little and had to stop going to school at 13 because she considered herself too dangerous for her and risked her skin in the light.
At the age of 16, Fatima began investigating her condition and admitted that she felt “stripped of her childhood” after learning that it could result in premature death.
“It was a difficult journey to get to where I am today,” he says. ‘I struggled a lot and it was difficult to accept my health problem.
“ I had to abandon my studies and do my studies from home, which made me feel that my childhood had been stolen.
“ Despite all this, at the age of sixteen, I Googled my disease and did a lot of research on it. I found out that this disease is quite dangerous and can lead to death.
Fatima should also wear SPF 90 sunscreen, as well as her helmet, which she must reapply every hour to ensure she is protected.
The condition leaves the skin unable to repair itself after exposure to ultraviolet radiation, which is present in daylight and some artificial light. Fatima is depicted holding her mask inside
“My parents never spoke to me about the real danger of my disease, as they wanted to protect me, but the more I found out about my disease, the stronger I became.”
Now Fatima is passionate about raising awareness of Xeroderma pigmentosum and hopes that by sharing her story, she can show other patients that they can still live full lives.
‘This disease is very difficult to treat, but I prefer to stay at home to protect myself from UV damage.
Fatima has had 55 surgeries so far to remove areas of concern in her eyes, tongue, nose, and head.
The cure for Xeroderma pigmentosum is unknown and, according to the NHS, in the UK only 70 per cent of sufferers live over 40 years.
Fatima’s family (pictured) has always supported her and is proud of her advocacy work.
Now, Fatima is passionate about raising awareness of xeroderma pigmentosa and belongs to the Association for Solidarity with the Children of the Moon, which helps people living with this condition.
She hopes that by sharing her own story she can show other patients on the condition that they can still live a full life.
Fatima’s family has always supported her and they are proud of their advocacy work.
“It is very important for me to be able to raise awareness because my disease is rare and unknown, so I need to raise awareness so that people are aware of the danger of this disease in the future,” he explains.
‘I am very optimistic, so I am sure I can inspire many people to cope with the disease. My family was so supportive that they are always proud of me.
“I want to tell people to live every day as if it were the last, no matter what happens, life is short so that people can live it completely.”
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