Nadia El Rami made an agreement with the head of her son’s school: Seven-year-old Mustapha would attend classes at the school, but only if he studies inside a cardboard box.
Mustapha Redouane happily accepted the agreement. He knew his mother’s idea would silence school officials’ worries about his condition.
The boy has a rare genetic disorder called xeroderma pigmentosum, or XP. It can make sunlight and other forms of ultraviolet light extremely damaging to the skin and eyes.
The disorder is more common in North Africa than in other areas of the world.
Now 8, Mustapha has already had 11 operations to remove cancerous growths from his skin.
His family is among thousands around the world struggling with XP.
What is XP?
XP affects about 1 in 10,000 people in North Africa. That is more than 10 times the rate in Europe and about 100 times the rate in the United States. Those numbers come from Kenneth Kraemer, a researcher at the U.S. National Institutes of Health.
People inherit XP from their parents. As a result, the condition 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 estimated that about 15% of marriages in the country are between family members.
Fatima El Fatouikai is a pediatric dermatology specialist at Ibn Rochd University Hospital in Casablanca. She said that living in an area where the sun shines year-round makes people with the disorder more likely to get skin cancers.
Without protection, few XP patients in Morocco live long enough to reach adulthood, El Fatouikai said. Living with the condition is particularly difficult in developing countries and in rural areas, she explained.
The truth is, she said, “We only have prevention as a possible treatment. These children ... have to avoid even minimum sun exposure.”
The main prevention measures include avoiding the sun, wearing protective clothing and using sunscreen products.
Lack of understanding
Twenty-five-year-old Fatimazehra Belloucy has had 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 frightened looks and hateful comments as she passes by people.
Her family limits interactions with her, fearful that her condition could spread to others.
“No one would take care of me, so I had to do it myself,” said Belloucy, who completed high school. She is now taking university classes. She hopes to find work that will let her help people with the condition.
“It hurts me that I have to see little kids suffer because of lack of awareness,” says Habib El Ghazaoui.
El Ghazaoui resigned from his position as a veterinarian. He decided to help children with XP after learning that his daughter Fatimazehra had the disorder.
Ghazaoui leads the Association for Solidarity with Children of the Moon from his house in the town of Mohammedia. He spends his time visiting families, giving out donations, and pressuring the government to take action.
XP support groups are increasingly sharing advice on the internet and social media. Last year, they held a meeting in London to share “practical hints” about special clothing, window protections and meters to measure light, noted NIH researcher Deborah Tamura.
The donations from Ghazaoui’s group reach families like those of Said El Mohamadi, a tailor in the Moroccan city of Salé. His 6-year-old daughter has the condition. His family is still debating the issue of schooling.
“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,” said her mother, Maria El Maroufi.
I’m John Russell.
And I’m Anne Ball.
Words in This Story
ultraviolet – adj. used to describe light that cannot be seen and that are slightly shorter than the rays of violet light
inherit – v. biology : to have a disease or condition because of the genes that you get from your parents when you are born
pediatric – adj. or, related to or affecting babies or children
dermatology – n. a field of medicine dealing with the skin, its structure and diseases
alienated – adj. describes a person who feels they no longer belong in a particular group, society, etc. — + from
awareness – n. knowing or understanding that something is happening or exists
hint – n. a small piece of information that helps you guess an answer or do something more easily
tailor – n. a person whose job is to make clothing for an individual