Clothes of Xeroderma Pigmentosum patients when exposed to sunlight
Rabat – Nohad Aafan
Every child looks forward to summer –long days, bright skies and playing in the sun until its time for bed.
But not for the Children of the Night
, for them the sun is their greatest enemy.
These are the victims of Xeroderma Pigmentosum, XP –an extreme genetic disorder which causes ulcers and burning of the skin if the individual is exposed to sunlight.
For 22-year-old Eman, from the Moroccan coastal city of El Jadida who suffers from XP, life is all about living in shadows and hiding from the sun.
She first became aware of her illness when she was two years, after a summer holiday to a beach in Badia. Her mother noticed unusual redness on her skin and took her to a doctor for examination.
Her worst fears became true when it was confirmed Eman suffered from the rare illness, which affects one in 250,000 people.
Since then she waits for the sun to go down before she can step outside, and even then has to wear gloves, sun block creams and dark glasses. Most people she says are either afraid of her or stare with, "pity and curiosity."
In the same city, 16-year-old Hamza also suffers from XP. The disorder wasn't detected until his condition worsened and severe burns started appearing on his face.
He said, "People do not allow me to go out and keep asking questions and insulting me, even the teacher and the students avoid me which made the management expel me from school."
XP affects both males and females from birth, and leads to a decrease in lifespan.
The illness is hereditary, and usually occurs as result of marriage between close relatives.
Currently there is no cure for Xeroderma Pigmentosum. Early diagnosis followed by extreme caution against exposure is the only means of protection.
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