By Rebecca Drew
MEET THE woman who has to wear a ‘space helmet’ to protect her skin from the sun and who hasn’t left the house without it for TWENTY YEARS.
Association of Solidarity with Children of the Moon consultant, Fatima Ghazaoui (28) from Mohammedia, 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.
Xeroderma pigmentosum is a rare genetic condition which leaves the skin unable to repair itself after exposure to ultraviolet radiation which is present in daylight and some artificial light and means a person is more likely to develop dangerous skin or eye cancers.
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.
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.
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 for her to attend and risk her skin being exposed to the light.
At 16, Fatima googled her condition and learnt that it could result in premature death and whilst this scared her at first, the more she learnt about her condition, the stronger Fatima 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.
“I was diagnosed with my disease when I was two years old,” said Fatima.
“In fact, I went to the doctor but he couldn’t diagnose my health problem, after that I went to another doctor and I was finally diagnosed with xeroderma pigmentosum.
“Xeroderma pigmentosum is a genetic disease which causes a sensitivity to UV rays and it happens when our skin is exposed to the sun. The sunburn causes redness and may increase the risk of developing skin cancer that needs to be removed via surgery. If not, many problems occur like congenital malformations.
“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.
“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. I had to give up my studies and do all my schooling from home which made me feel like I was robbed of my childhood.
“Despite all of this, at the age of sixteen, I googled my disease and did a lot of research about it. I found out that this disease is quite dangerous, and it may lead to death.
“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.
There is no known cure of xeroderma pigmentosum and according to the NHS, in the UK only 70 per cent of xeroderma pigmentosum patients live beyond the age of 40.
Fatima’s family have always been supportive of her and they are proud of her advocacy work.
“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,” she said.
“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.”