Living with a NASA 'astronaut helmet' for two decades and counting, Moroccan girl braves rare skin disease
New Delhi | Jagran Trending Desk: Twenty six years ago, an intensely spotted decolouration of a two-year-old Fatima Ghazaoui's skin led to the diagnosis of a rare skin disease which she continues to brave till this day. And an astronaut helmet wearing which remains a life-sought adventure for many astrophysics enthusiasts globally, became necessary for Fatima's survival since the time when she was barely an eight-year-old.
Xeroderma pigmentosum, a rare ‘one in a million’ genetic skin condition with which Morocco-based Fatima suffers from, induces extreme sensitivity in one's skin against sun's UV rays. And for two decades, Fatima is braving the wrath of sun's UV rays, thanks to the Astronaut helmet.
According to a Daily Mail report, Fatima's day starts at the night, and she rarely gets herself out in the day.
For over twenty years, Fatima says, she hasn't been out in the sun without wearing her protective gear including an astronaut helmet and SPF 90 sun cream that she has to re apply every hour to ensure she remains protected. Fatima's home has special UV filter in home to avoid sun's exposure.
“I rarely go out in daylight but if I have to,” Fatima tells Dailymail, while adding that she has to wear what she calls “a NASA mask” as well as gloves to protect herself from sun rays.
“My day is different from other people's, I spend all day indoors and my day starts at night,” says Fatima.
Even on a cloudy day, Fatima gets easily sunburnt, with severe freckles that risk her skin up to the point of developing a cancer of skin or eye.
Due to extreme risk of exposure to sun, Fatima had to stop going to school when she was thirteen-years-old. Fatima admits that she felt ‘robbed of her childhood’ after knowing that going to school meant risking her life just at the onset of her teenage.
‘Important too raise awareness’, says Fatima
Fatima, who has had 55 surgeries so far to remove areas of concern on her eyes, tongue, nose and head, also remains concerned about the others who suffer from similar condition. She believes that she and her story of battling Xeroderma pigmentosum can make a difference.
“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,” Fatima says.
Posted By: Abhinav Gupta