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Woman with rare genetic disorder wears ‘space helmet’ to protect her skin from the sun

A woman with a rare genetic condition has told how she wears a mask that looks like a ‘space helmet’ to protect her skin from harmful UV rays – and that she hasn’t left the house for 20 years.

Just two-year-old Fatima Ghazaoui, 28, from Mohammedia, Morocco, was diagnosed with the rare skin condition Xeroderma pigmentosum after her parents noticed intense freckles on her skin.

The genetic condition prevents the skin from repairing itself after exposure to ultraviolet rays, which is present in daylight and some artificial light, and means that a person is more likely to develop dangerous skin or eye cancers.

Fatima has not been in the daylight for more than 20 years without wearing sun protection in the form of gloves and the helmet, which she affectionately calls her ‘NASA mask’, and usually starts her days at nightfall.

Fatima Ghazaoui, 28, from Mohammedia, Morocco, was diagnosed with the rare skin condition xeroderma pigmentosum at the age of two and is now wearing a 'space helmet' to protect her skin

Fatima Ghazaoui, 28, from Mohammedia, Morocco, was diagnosed with the rare skin condition xeroderma pigmentosum at the age of two and is now wearing a ‘space helmet’ to protect her skin

Fatima has not been in daylight for more than 20 years without wearing sun protection in the form of gloves and a helmet, which she affectionately calls her 'NASA mask'

Fatima has not been in daylight for more than 20 years without wearing sun protection in the form of gloves and a helmet, which she affectionately calls her 'NASA mask'

Fatima has not been in daylight for more than 20 years without wearing sun protection 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 have to wear what I call a NASA mask, as well as 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 starts at night. ‘

The condition means that Fatima burns easily even on a mild or cloudy day, and suffers from severe freckles, while showing visible signs of dry skin and aging.

Her sunburn causes redness and can increase the risk of developing skin cancer that needs to be removed through surgery.

“I was diagnosed with my illness when I was two years old,” Fatima said.

“I even went to the doctor, but he couldn’t diagnose my health problem, then I went to another doctor and was finally diagnosed with Xeroderma pigmentosum.”

Due to the risk of sun exposure, Fatima’s day starts at night, she rarely goes out during the day.

She says she hasn’t been in daylight for over 20 years without wearing sun protection. Fatima must also wear SPF 90 sunscreen that she has to reapply every hour to ensure she is protected and she has a special UV filter on her windows at home.

The condition means that Fatima burns easily even on a mild or cloudy day, and suffers from severe freckles, while showing visible signs of dry skin and skin aging

The condition means that Fatima burns easily even on a mild or cloudy day, and suffers from severe freckles, while showing visible signs of dry skin and skin aging

The condition means that Fatima burns easily even on a mild or cloudy day, and suffers from severe freckles, while showing visible signs of dry skin and skin aging

Fatima struggled to accept her state of health when she was growing up and she had to drop out of school at age 13

Fatima struggled to accept her state of health when she was growing up and she had to drop out of school at age 13

Fatima struggled to accept her state of health when she was growing up and she had to drop out of school at age 13

Due to the risk of sun exposure, Fatima's day starts at night, she rarely goes out during the day

Due to the risk of sun exposure, Fatima's day starts at night, she rarely goes out during the day

Due to the risk of sun exposure, Fatima’s day starts at night, she rarely goes out during the day

WHAT IS XERODERMA PIGMENTOSUM?

Xeroderma pigmentosum (XP) is an inherited condition that causes extreme sensitivity to UV rays from the sun.

It has been described as a ‘one-in-a-million’ condition.

XP is caused by a genetic mutation.

Sufferers need full sun protection, including clothing, sunscreen, and dark sunglasses.

Eighty to 90 percent of patients also experience:

  • Joint pain
  • Cognitive problems
  • Teeth abnormalities

Because patients are at a high risk of sunburn, skin cancer is very common in patients.

There is no cure for XP.

Management of the condition includes protection from UV light, frequent skin exams and rapid removal of cancerous tissue.

Source: National Center for Advanced Translation Sciences

Fatima struggled to accept her state of health when she was growing up and she had to drop out of school at age 13 because it was considered too dangerous for her to attend and expose her skin to the light.

At the age of 16, Fatima began to investigate her condition and admitted to feeling “deprived of her youth” after learning that this could lead to premature death.

“It was a tough journey to get to where I am now,” she says. “I was struggling and it was difficult to accept my health problem.

“I had to give up my studies and do all my schooling from home, which made me feel like I was deprived of my childhood.

Nevertheless, at the age of sixteen I googled my illness and did a lot of research into it. I found out that this disease is quite dangerous and can lead to death.

Fatima must also wear SPF 90 sunscreen, as well as her helmet, which she must reapply every hour to ensure she is protected

Fatima must also wear SPF 90 sunscreen, as well as her helmet, which she must reapply every hour to ensure she is protected

Fatima must also wear SPF 90 sunscreen, as well as her helmet, which she must reapply every hour to ensure she is protected

The condition prevents the skin from repairing itself after exposure to ultraviolet rays, which is present in daylight and some artificial light that keeps Fatima in the picture while keeping her mask indoors

The condition prevents the skin from repairing itself after exposure to ultraviolet rays, which is present in daylight and some artificial light that keeps Fatima in the picture while keeping her mask indoors

The condition prevents the skin from repairing itself after exposure to ultraviolet rays, which is present in daylight and some artificial light that keeps Fatima in the picture while keeping her mask indoors

“My parents never told me about the real danger of my illness because they wanted to protect me, but the more I learned about my illness, the stronger I got.”

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 undergone 55 surgeries to remove areas of concern on her eyes, tongue, nose and head to date.

There is no known cure for Xeroderma pigmentosum, and according to the NHS, only 70 percent of those who have it live, over the age of 40, in the UK.

Fatima's family (photo) has always supported her and they take pride in her advocacy work

Fatima's family (photo) has always supported her and they take pride in her advocacy work

Fatima’s family (photo) has always supported her and they take pride in her advocacy work

Fatima is now passionate about raising awareness of xeroderma pigmentosum and belongs to the Association of Solidarity with Children of the Moon, which helps people living with the condition

Fatima is now passionate about raising awareness of xeroderma pigmentosum and belongs to the Association of Solidarity with Children of the Moon, which helps people living with the condition

Fatima is now passionate about raising awareness of xeroderma pigmentosum and belongs to the Association of Solidarity with Children of the Moon, which helps people living with the condition

She hopes that by telling her own story, she can show other patients with the condition that they can still live a full life

She hopes that by telling her own story, she can show other patients with the condition that they can still live a full life

She hopes that by telling her own story, she can show other patients with the condition that they can still live a full life

Fatima’s family has always supported her and they take pride in her advocacy work.

“It is so important to me 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,” she explains.

“I am very optimistic, so I am sure I can inspire many people to deal with the disease. My family was so supportive, they are always proud of me.

“I want to tell people to live every day like it’s the last one, no matter what, life is short, so people have to live it to the fullest.”

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