rain.png
Sunday October 13th, 2019 6:44PM

When light is lethal: Moroccans struggle with skin disorder

By The Associated Press
Related Articles
  Contact Editor

CASABLANCA, Morocco (AP) — 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.

"I hate the sun anyways. 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 8, 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, according to Dr. Kenneth Kraemer, who researches XP at the U.S. National Institutes of Health.

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.

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

Without protection, few XP patients in Morocco live beyond their teenage years, 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 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 rumor about a new XP treatment.

The truth is, she says, "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 Belloucy, who received her high school diploma and is now enrolled in university. She hopes to land work helping with the disease.

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.

"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.

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 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.

___

Nadine Achoui-Lesage and Mosa'ab Elshamy in Casablanca and Mohammedia contributed.

  • Associated Categories: Associated Press (AP), AP National News, AP Online National News, Top General short headlines, AP Health, AP Health - Children's Health, AP World News
© Copyright 2019 AccessWDUN.com
All rights reserved. This material may not be published, broadcast, rewritten, or redistributed without permission.
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
2:56AM ( 1 minute ago )
India eases restrictions in Kashmir for Islamic festival
Authorities in Indian-administered Kashmir say restrictions have been eased in most parts of Srinagar ahead of an Islamic festival following India's decision to strip the region of its constitutional autonomy
2:55AM ( 2 minutes ago )
LEADING OFF: Mets surge, Astros go yard, Aquino's power
LEADING OFF: Mets surging, Astros go yard in Baltimore, Aquino powers Reds
2:41AM ( 16 minutes ago )
Associated Press (AP)
Epstein dies in the dark, but abuse investigation carries on
Jeffrey Epstein has died of an apparent suicide in jail, prompting an investigation into his death and assurance from a U.S. official that allegations of sexual abuse and conspiracy will not be cast aside
12:09AM ( 2 hours ago )
US attorney: Epstein abuse probe steadfast despite his death
Officials say the FBI and the Justice Department's inspector general's office will investigate how Jeffrey Epstein died in an apparent suicide, while the probe into sexual abuse allegations against the well-connected financier remains ongoing
11:33PM ( 3 hours ago )
Families mourn, bury those killed in Ohio, Texas shootings
Families and friends left mourning lives lost in the El Paso and Dayton mass shootings bury the dead
10:13PM ( 4 hours ago )
AP National News
Biden is still the Democrat to beat, but rivals see weakness
Three months after announcing his White House bid, Joe Biden remains atop early polling
8:22PM ( 6 hours ago )
Amid protest, Hawaii astronomers lose observation time
Astronomers across 11 observatories on Hawaii's tallest mountain have cancelled more than 2,000 hours of telescope viewing over the past four weeks because a protest blocked a road to the summit
8:18PM ( 6 hours ago )
N. Korea says leader Kim supervised tests of weapons systems
North Korea says leader Kim Jong Un supervised test-firings of an unspecified new weapons system, which extended a streak of weapons demonstrations that are seen as an attempt to build leverage ahead of negotiations with the United States
7:50PM ( 7 hours ago )
Top General short headlines
India eases restrictions in Kashmir for Islamic festival
Authorities in Indian-administered Kashmir say restrictions have been eased in most parts of Srinagar ahead of an Islamic festival following India's decision to strip the region of its constitutional autonomy
2:55AM ( 2 minutes ago )
LEADING OFF: Mets surge, Astros go yard, Aquino's power
LEADING OFF: Mets surging, Astros go yard in Baltimore, Aquino powers Reds
2:41AM ( 16 minutes ago )
Epstein suicide sparks fresh round of conspiracy theories
Jeffrey Epstein's suicide in a federal jail is sparking a fresh round of conspiracy theories online, and even from prominent officials, in a case that has long provided fuel for them.
2:13AM ( 45 minutes ago )
Afghan leader rejects foreign interference as talks advance
Afghan leader rejects foreign interference in country's fate as US, Taliban near peace deal
2:12AM ( 45 minutes ago )
49ers beat Cowboys 17-9 in exhibition opener
Dak Prescott completed all four of his pass attempts, caught one and led Dallas to a field goal in a brief cameo in the exhibition opener as the Cowboys went on to lose to the San Francisco 49ers 17-9
1:26AM ( 1 hour ago )