Woman allergic to sun hasn't been outside without a mask for 20 years
Fatima Ghazaoui, 28, from Mohammedia, Morocco, was diagnosed with a rare skin condition after her parents noticed intense freckling of her skin when she was two.
The genetic condition called xeroderma pigmentosum leaves the skin unable to repair itself after exposure to ultraviolet radiation, which is present in daylight and some artificial light.
If exposed, a person is more likely to develop dangerous skin or eye cancers.
Fatima hasn’t been out in daylight for over 20 years without protecting herself with gloves and a helmet, which she calls her ‘NASA mask’.
She also begins her day at night.
The condition means Fatima is easily sunburnt, even on a mild or cloudy day, and suffers with severe freckles, while having visible signs of dry skin and skin ageing.
Her sunburn causes redness and may increase the risk of developing skin cancers that need to be removed via surgery.
Fatima also has to wear SPF 90 sun cream which she has to re-apply every hour to ensure she is protected and she has a special UV filter on her windows at home.
‘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.’
She added: ‘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.’
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 the age of 16, Fatima began to research her condition and admitted she felt ‘robbed of her childhood’ after learning it could it could result in premature death.
‘It was a hard journey to get to where I am today, she says. ‘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.’
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% of those who have it live beyond the age of 40.
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.
She added: ‘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.’
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