CASABLANCA, Morocco – Determined for her son to attend school despite a life-threatening sensitivity to sunlight, Nadia El Rami stuck a deal with the school: He could attend, but only if he studies inside a cardboard box.
Mustapha Redouane happily accepted. He knew his mother’s idea would silence the school’s worries about his rare genetic disorder called xeroderma pigmentosum, or XP, which can make sun rays and other sources of ultraviolet light damaging to the skin and eyes.
Now 8, Mustapha has had 11 operations to remove cancerous growths on his skin. His family is among thousands struggling with XP, and increasingly sharing advice and seeking new treatments. In Morocco, families are also fighting for recognition, government help — and the simple right to go to school.
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 U.S., said Dr. Kenneth Kraemer, who researches XP at the National Institutes of Health.
Affected children inherit two copies of a mutated gene, one from each parent. 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, a pediatric dermatology specialist.
Without protection, few XP patients in Morocco live beyond their teen years, El Fatouikai said. It is particularly challenging in developing countries, where an awareness and access to treatments are scarce, and in poor, rural communities where people spend more time outside.
The main prevention measures: avoiding the sun and wearing protective clothing, face shields and sunscreen.
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. Her family limits interactions with her, fearful that the disease is contagious.
“No one would take care of me, so I had to do it myself,” said Belloucy, who is now enrolled in university.
Most Moroccan children with XP don’t continue their education. While U.S. schools install window filters for XP pupils, such accommodations are rare in Morocco.
“It hurts me that I have to see little kids suffer because of lack of awareness,” said Habib El Ghazaoui, who quit his veterinary job to help children with XP after learning that his daughter Fatimazehra had the disorder. His daughter has had 50 operations for cancerous growths. She mostly sleeps during the day but, as the sun sets, she goes to parks and cafes, determined to lead a normal life.
Ghazaoui juggles his time between visiting families, distributing creams and masks, providing the hospital with data and pressuring the government to take action.
Meanwhile, families from all around Morocco waited to see El Fatoikai. There is a rumor about a new XP treatment. The truth is, she said, “We only have prevention as a possible treatment.”