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A woman with a rare genetic disorder wears a space helmet to protect her skin from the sun


A woman with a rare genetic disorder has told how she wears a mask that looks like a "space helmet" to protect her skin from harmful UV rays – and hasn't left the house without it for 20 years.

When she was only two years old, 28-year-old Fatima Ghazaoui from Mohammedia, Morocco, was diagnosed with the rare skin disease Xeroderma pigmentosum after her parents found severe freckles on her skin.

Due to the genetic condition, the skin cannot repair itself after exposure to ultraviolet radiation, which is present in daylight and some artificial light. This means that a person is more likely to develop dangerous skin or eye cancer.

Fatima has not been in daylight for over 20 years without wearing sunscreen in the form of gloves and the helmet, which she fondly calls the "NASA mask", and usually begins her days at nightfall.

Fatima Ghazaoui, 28, from Mohammedia, Morocco, was diagnosed with the rare skin disease 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 over 20 years without wearing sun protection in the form of gloves and a helmet, which they lovingly love

Fatima has not been 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".

"I rarely go out in daylight, but when I have to," says Fatima, "I have to wear a so-called 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 starts at night."

The condition means that even on a mild or cloudy day, Fatima is slightly sunburned and suffers from heavy freckles, while there are visible signs of dry skin and aging.

Your sunburn causes redness and may increase the risk of skin cancer that needs surgery.

"When I was two years old, I was diagnosed with my illness," said Fatima.

"In fact, I went to the doctor, but he couldn't diagnose my health problem. Then I went to another doctor and finally I was diagnosed with Xeroderma pigmentosum."

Because of the risk of sun exposure, Fatima's 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 wear sunscreen 90, which she has to reapply every hour to make sure she is protected, and she has a special UV filter on her windows at home.

The condition means that even on a mild or cloudy day, Fatima is slightly sunburned and suffers from heavy freckles, while there are visible signs of dry skin and aging

The condition means that even on a mild or cloudy day, Fatima is slightly sunburned and suffers from heavy freckles, while there are visible signs of dry skin and aging

Fatima had trouble accepting her health when she was growing up and had to stop going to school at the age of 13

Fatima had trouble accepting her health when she was growing up and had to stop going to school at the age of 13

Because of the risk of sun exposure, Fatima's day begins at night, rarely going outside during the day

Because of the risk of sun exposure, Fatima's day begins at night, rarely going outside during the day

WHAT IS XERODERMA PIGMENTOSUM?

Xeroderma pigmentosum (XP) is an inherited disorder that causes extreme sensitivity to the sun's UV rays.

It has been described as a "one in a million" condition.

XP is caused by a genetic mutation.

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

Eighty to 90 percent of those affected also experience:

  • Joint pain
  • Cognitive problems
  • Tooth abnormalities

Because of the high risk of sunburn, skin cancer is extremely common in patients.

There is no cure for XP.

Treatment for the condition includes protection from UV light, frequent skin exams, and the immediate removal of cancerous tissue.

Source: National Center for the Promotion of Translational Sciences

Fatima struggled to accept her health when she was growing up, and she had to stop attending school at the age of 13 because it was too dangerous for her to participate and risk exposing her skin to light.

At the age of 16, Fatima began to examine her condition and admitted that she felt deprived of her childhood after learning that this could lead to premature death.

"Getting there where I am today has been a difficult journey," she says. “I had big problems and it was difficult to accept my health problem.

“I had to give up my studies and go to my entire school from home, which made me feel like I was robbed of my childhood.

Despite all this, I googled my illness at the age of 16 and did a lot of research about it. I found that this disease is quite dangerous and can lead to death.

Fatima must also wear sunscreen with sun protection factor 90 and her helmet, which she has to reapply every hour to ensure her protection

Fatima must also wear sunscreen with sun protection factor 90 and her helmet, which she has to reapply every hour to ensure her protection

The condition leaves the skin unable to repair itself after being exposed to ultraviolet radiation, which is present in daylight and some artificial light. Fatima holds her mask in the house

The condition leaves the skin unable to repair itself after being exposed to ultraviolet radiation, which is present in daylight and some artificial light. Fatima holds her mask in the house

"My parents never informed me of the real danger of my illness because they wanted to protect me, but the more I learned about my illness, 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 sufferers that they can still live a fulfilling life.

“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 problem areas on the eyes, tongue, nose and head.

There is no known cure for Xeroderma pigmentosum, and according to the NHS, only 70 percent of those in the UK who live there are over 40 years old.

Fatima's family (pictured) has always supported her and is proud of her advocacy work

Fatima's family (pictured) has always supported her and is proud of her advocacy work

Now Fatima is passionately keen to raise awareness of Xeroderma pigmentosum and is a member of the Association for Solidarity with Children of the Moon, which helps people living with this disease

Now Fatima is passionately keen to raise awareness of Xeroderma pigmentosum and is a member of the Association for Solidarity with Children of the Moon, which helps people living with this disease

She hopes that by sharing her own story, she can show others that she can still live a full life

She hopes that by sharing her own story, she can show others that she can still live a full life

Fatima's family has always supported them and they are proud of their advocacy work.

"It is so important to me to raise awareness because my illness is rare and unknown, so I have to raise awareness so that people become aware of the danger of this illness in the future," she explains.

“I am very optimistic and I am sure that I can inspire many people to deal with the disease. My family supported me so much that they are always proud of me.

"I want to tell people to live every day as if it were the last thing, no matter what. Life is short, so people should live it fully."

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