When light is lethal: Moroccans struggle with skin disorder

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Determined for her 7-year-old son to attend 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.

Mustapha Redouane happily accepted the arrangement. He knew his mother's idea would silence the school's worries about his condition, a rare genetic disorder called xeroderma pigmentosum, or XP, which can make sun rays and other sources of ultraviolet light extremely damaging to the skin and eyes. The disorder is more common in North Africa than much of the world.

Because the disorder is inherited, XP is more common in populations where marriage between relatives is high, 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. Outside of El Fatoikai's office, families coming from all around Morocco sit in a waiting room eager for their names to be called. There is a rumour about a new XP treatment.

Most Moroccan children with XP don't continue their education. While U.S. schools install window filters for XP pupils and otherwise adapt to their needs, such accommodations are rare in Morocco. Ghazaoui leads the Association for Solidarity with Children of the Moon from his house in the town of Mohammedia. He juggles his time between visiting families, distributing donations of creams and masks, providing the Casablanca hospital with data and pressuring the government to take action.

 

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Stopping the inbreeding would go a long ways in preventing the skin disorder.

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