When light is lethal: Moroccans struggle with skin disorder

Families in Morocco are fighting for awareness and government help about a rare genetic disorder that causes a life-threatening sensitivity to light

Romaisae, 6, who is affected by a rare disorder called xeroderma pigmentosum, or XP, poses for a portrait in her home in the town of Sale, near Rabat, 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 US National Institutes of Health. AP Photo

Fatimazehra El Ghazaoui, 27, a woman affected by a rare disorder called xeroderma pigmentosum, or XP, stands at the window of her home, in Mohammedia, near Casablanca, Morocco. AP Photo

Habib El Ghazaoui, a father who runs the Association for Solidarity with Children of the Moon, plays with 8 year-old Mustapha who is affected by a rare genetic disorder called xeroderma pigmentosum, or XP, inside a hospital in Casablanca, Morocco. AP Photo

Maria El Maroufi, shares a moment with her 6 year-old daughter Romaisae who is affected by a rare disorder called xeroderma pigmentosum, or XP, in their home in the town of Sale, near Rabat, Morocco. AP Photo

Nadia El Rami walks with her 8 year-old son, Mustapha, who is affected by a rare genetic disorder called xeroderma pigmentosum, or XP, outside a hospital in Casablanca, Morocco. AP Photo

A nurse takes off a protective mask as she performs skin check-ups on 6 year-old Yasmin, who is affected by a rare disorder called xeroderma pigmentosum, or XP, inside a hospital in Casablanca, Morocco. AP Photo

Fatimazehra Belloucy, 25, a woman affected by a rare disorder called xeroderma pigmentosum, or XP, poses for a portrait in Casablanca, Morocco. AP Photo

Said El Mohamadi shares a moment with his 6 year-old daughter Romaisae who is affected by a rare disorder called xeroderma pigmentosum, or XP, in their home in the town of Sale, near Rabat, Morocco. AP Photo

Fatimazehra El Ghazaoui, 27, a woman affected by a rare disorder called xeroderma pigmentosum, or XP, poses for a portrait holding a protective mask she wears outside on sunny days, inside her home in Mohammedia, near Casablanca, Morocco. AP Photo

families wait with their children affected by a rare disorder called xeroderma pigmentosum, or XP, inside a hospital in Casablanca, Morocco. AP Photo

Determined for her seven-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.

“I hate the sun anyway. It gives me blisters,” he said, sitting on his mother’s lap, his face covered with the dark brown freckles that the school director considered a distraction to other students.

Now eight, Mustapha has already had 11 operations to remove cancerous growths on his skin.

His family is among thousands around the world 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 United States, said Dr Kenneth Kraemer, who researches XP at the US National Institutes of Health.

Because the disorder is inherited, XP is more common in populations where marriage between relatives 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 per cent of marriages are between family members.

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, paediatric dermatology specialist at the Ibn Rochd University Hospital in Casablanca.

Without protection, few XP patients in Morocco live beyond their teenage years, Ms El Fatouikai said. 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.

Outside Ms 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.

“We only have prevention as a possible treatment. These children … have to avoid even minimum sun exposure.” 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 Ms Belloucy, who received her high school diploma and is now enrolled in university. She hopes to secure work helping with the disease.

Most Moroccan children with XP don’t continue their education. While US schools install window filters for XP pupils and otherwise adapt to their needs, such accommodations are rare in Morocco.

“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.

His daughter, now a young adult raising awareness on social media, has had 50 operations for cancerous growths on her tongue, eyelids and elsewhere. She stays indoors and mostly sleeps during the day but, as the sun sets, she goes to parks and cafes, determined to lead a normal life.

Mr El 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.

XP support groups are increasingly sharing advice online. They held an exceptional meeting in London last year to share “hundreds of practical hints” about hoods, window protections or meters to measure light and even a French-designed face shield with a fan in it, said NIH researcher Deborah Tamura.

The donations from Mr El Ghazaoui’s group reach families like those of Said El Mohamadi, a tailor in the city of Salé, whose six-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.