Photos | When light is lethal: Moroccans struggle with skin disorder

Aug 13, 2019 12:57 IST

Fatimazehra El Ghazaoui, 27, a woman affected by a rare disorder called xeroderma pigmentosum, or XP, puts on a protective mask she wears outside on sunny days, in her home in Mohammedia, near Casablanca, Morocco. 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. (Mosa'ab Elshamy / AP)

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Fatimazehra El Ghazaoui, 27, a woman affected by a rare disorder called xeroderma pigmentosum, or XP, puts on a protective mask she wears outside on sunny days, in her home in Mohammedia, near Casablanca, Morocco. 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. (Mosa'ab Elshamy / AP)

Nadia El Rami walks with her 8 year-old son, Mustapha, who is affected by a rare genetic disorder, outside a hospital. 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. (Mosa'ab Elshamy / AP)

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Nadia El Rami walks with her 8 year-old son, Mustapha, who is affected by a rare genetic disorder, outside a hospital. 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. (Mosa'ab Elshamy / AP)

A nurse takes off a protective mask as she performs skin check-ups on 6 year-old Yasmin. The disorder is inherited, and 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. (Mosa'ab Elshamy / AP)

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A nurse takes off a protective mask as she performs skin check-ups on 6 year-old Yasmin. The disorder is inherited, and 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. (Mosa'ab Elshamy / AP)

Fatimazehra El Ghazaoui, 27, a woman affected by a rare disorder stands at the window of her home. A rare genetic disorder called xeroderma pigmentosum, or XP, can make sun rays and other sources of ultraviolet light extremely damaging to the skin and eyes. This disorder is more common in North Africa than much of the world. (Mosa'ab Elshamy / AP)

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Fatimazehra El Ghazaoui, 27, a woman affected by a rare disorder stands at the window of her home. A rare genetic disorder called xeroderma pigmentosum, or XP, can make sun rays and other sources of ultraviolet light extremely damaging to the skin and eyes. This disorder is more common in North Africa than much of the world. (Mosa'ab Elshamy / AP)

Families wait with their children affected by a rare disorder inside a hospital. There is a rumor about a new XP treatment. It is particularly challenging in developing countries, where an awareness of the disorder and access to treatments are scarce, and in poor, rural communities where people spend more time outside. (Mosa'ab Elshamy / AP)

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Families wait with their children affected by a rare disorder inside a hospital. There is a rumor about a new XP treatment. It is particularly challenging in developing countries, where an awareness of the disorder and access to treatments are scarce, and in poor, rural communities where people spend more time outside. (Mosa'ab Elshamy / AP)

Fatimazehra Belloucy, 25, has dealt with skin cancer and other problems because of XP. “If only people made it easier. Their words hurt. I feel entirely alienated,” she said, describing how she faces scared looks and hateful comments as she passes by. “No one would take care of me, so I had to do it myself,” said Belloucy, who received her high school diploma and is now enrolled in university. She hopes to land work helping with the disease. (Mosa'ab Elshamy / AP)

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Fatimazehra Belloucy, 25, has dealt with skin cancer and other problems because of XP. “If only people made it easier. Their words hurt. I feel entirely alienated,” she said, describing how she faces scared looks and hateful comments as she passes by. “No one would take care of me, so I had to do it myself,” said Belloucy, who received her high school diploma and is now enrolled in university. She hopes to land work helping with the disease. (Mosa'ab Elshamy / AP)

Maria El Maroufi, shares a moment with daughter Romaisae in their home. 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. (Mosa'ab Elshamy / AP)

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Maria El Maroufi, shares a moment with daughter Romaisae in their home. 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. (Mosa'ab Elshamy / AP)

Habib El Ghazaoui (R) who runs the Association for Solidarity with Children of the Moon, distributes cream to parents of children affected by a rare disorder inside a hospital. “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. (Mosa'ab Elshamy / AP)

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Habib El Ghazaoui (R) who runs the Association for Solidarity with Children of the Moon, distributes cream to parents of children affected by a rare disorder inside a hospital. “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. (Mosa'ab Elshamy / AP)

The donations from Ghazaoui’s group reach families like those of Said El Mohamadi, a tailor in the city of Salé, whose 6-year-old daughter has the condition. His family is still debating the topic of school. “She’s sad, but I can’t risk taking her to school where there isn’t any kind of protection,” he said. “But she needs an education,” her mother Maria El Maroufi pleads. (Mosa'ab Elshamy / AP)

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The donations from Ghazaoui’s group reach families like those of Said El Mohamadi, a tailor in the city of Salé, whose 6-year-old daughter has the condition. His family is still debating the topic of school. “She’s sad, but I can’t risk taking her to school where there isn’t any kind of protection,” he said. “But she needs an education,” her mother Maria El Maroufi pleads. (Mosa'ab Elshamy / AP)

about the gallery

In Morocco, families are fighting against a rare genetic disorder called xeroderma pigmentosum, or XP, which makes sun rays and other sources of ultraviolet light extremely damaging to the skin and eyes. 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.

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