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When light is lethal: Moroccans struggle with skin disorder

"I hate the sun anyways"AP
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"I hate the sun anyways"
Says Mustapha Redouane. Determined to send her 7-year-old son to school despite a life-threatening sensitivity to sunlight, Nadia El Rami stuck a deal with the school’s director: Mustapha would be allowed in the classroom, but only if he studies inside a cardboard box.

8-year old Mustapha has already had 11 operations to remove cancerous growths on his skin. His family is among thousands around the world struggling with Xeroderma pigmentosum (XP), and increasingly seeking new treatments.
The malignant maladyAP
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The malignant malady
Xeroderma pigmentosum, commonly known as XP, is an inherited condition characterized by an extreme sensitivity to ultraviolet (UV) rays from sunlight. This condition affects mostly the eyes and areas of skin exposed to the sun. Some affected individuals have also reported problems involving the nervous system and have a high risk of developing skin cancer.

The signs of xeroderma pigmentosum usually appear in infancy or early childhood.
What causes it?AP
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What causes it?
Because the disorder is inherited, XP is more common in populations where marriage between blood-relations is high, Dr. Kraemer said. Affected children inherit two copies of a mutated gene, one from each parent. A 2016 Moroccan government study estimates about 15% of marriages are between family members.
Countries affected till nowAP
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Countries affected till now
The disorder affects about 1 in 10,000 people in North Africa — more than 10 times the rate in Europe and about 100 times the rate in the United States, according to Dr. Kenneth Kraemer, who researches XP at the U.S. National Institutes of Health.
Slightest sun exposure results in XPAP
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Slightest sun exposure results in XP
Living in a country where the sun shines year-round makes them more susceptible to skin cancers that can be caused by the disorder, said Fatima El Fatouikai, pediatric dermatology specialist in Casablanca. Without protection, few XP patients in Morocco live beyond their teenage years, El Fatouikai said.
The man with a cause; Habib El GhazaouiAP
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The man with a cause; Habib El Ghazaoui
"It hurts me that I have to see little kids suffer because of lack of awareness" says Habib El Ghazaoui, who quit his veterinary job and made it his life’s mission to raise awareness and help children with XP after learning that his daughter Fatimazehra had the disorder.
Prevention is the only cureAP
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Prevention is the only cure
Off and on there spreads a word about a new preventive cure for XP but the doctors deny the rumours entirely claiming that prevention is the only cure for this with minimal sun exposure.
XP support groups are increasingly sharing advice online.
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