Moroccans struggle with skin disorder

Fatimazehra El-Ghazaoui, 27, a woman affected by XP, a rare disorder, wears a protective mask during sunny days, at her home in Mohammedia, Morocco. (AP)
Updated 11 August 2019

Moroccans struggle with skin disorder

  • Xeroderma pigmentosum, or XP, is a rare genetic disorder, which can make sun rays and other sources of ultraviolet light extremely damaging to the skin and eyes

CASABLANCA: 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 US, according to 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, Kraemer said. Affected children inherit two copies of a mutated gene, one from each parent. A 2016 Moroccan government study estimates about 15 percent 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 do not 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.

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 Sale, 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.


Britain’s William and Kate begin ‘complex’ tour of Pakistan

Updated 8 min 58 sec ago

Britain’s William and Kate begin ‘complex’ tour of Pakistan

ISLAMABAD: Prince William and his wife Kate arrived in Pakistan to a red carpet welcome late Monday for their “most complex” tour to date, with Islamabad eager to tout improved security after years of violent militancy.
The couple — the Duchess of Cambridge in a sea-green shalwar kameez, and the Duke in a dark suit — were greeted by Foreign Minister Shah Mehmood Qureshi and presented with flowers after they landed in a British government plane at a military base in Rawalpindi, the garrison city adjacent to the capital Islamabad, state television images showed.


Details of the five-day visit are being kept under wraps. Security is expected to be tight for the couple’s first official trip to Pakistan, and the first visit by a British royal since William’s father Charles and his wife Camilla came in 2006.
In addition to Islamabad they are set to visit the ancient Mughal capital of Lahore, as well as the mountainous north and the region near the border with Afghanistan in the west.
Kensington Palace has called the trip “the most complex tour undertaken by The Duke and Duchess to date, given the logistical and security considerations.”
The couple are also expected to meet Prime Minister Imran Khan, who was close friends with William’s mother, the late Princess Diana.
“I’ve always been struck by the warmth in Pakistan toward the Royal Family,” British High Commissioner Thomas Drew said in a video published to Twitter late Sunday.
The couple’s program will pay respect to Britain’s historic relationship with Pakistan, once part of colonial India, he said.
“But it will focus largely on showcasing Pakistan as it is today, a dynamic, aspirational, and forward-looking nation,” Drew continued.
They are expected to see Pakistan’s efforts to combat climate change and learn about the “complex security” of the region, among other issues, a statement from Kensington Palace said earlier this month.
Pakistan has waged a long battle with militancy which has seen tens of thousands of people killed in the past 15 or so years.
Charles’ and Camilla’s 2006 trip was tainted when they were forced to pull out of a visit to Peshawar over safety concerns after the military launched an airstrike on a religious school that killed 80 people.
But security has improved dramatically since the army intensified a crackdown on militant groups in 2015, with several countries changing their travel warnings for Pakistan as a result, and Islamabad eager to promote both tourism and foreign investment.
There are promising signs, such as the British Airways return earlier this year after more than a decade, and the slow but steady revival of international cricket.
Analysts have long warned that Pakistan is not yet getting to the root causes of extremism, however, and militants retain the ability to carry out attacks, including in urban areas.
Moments before the couple’s arrival Monday, Qureshi used televised comments to invoke the memory of Diana, who charmed Pakistanis when she visited in her official capacity in 1991.
She also made several private visits in later years to help Khan — then a cricketer-turned-opposition politician married to her friend Jemima — raise money for a cancer hospital in Lahore.
“She is held in very high esteem in Pakistan... We are happy that the Duke and Duchess of Cambridge are now coming,” Qureshi said.
The visit showed that Pakistan has come out of “difficult times,” he added.
Pakistan was carved out of colonial India to become independent from Britain in 1947, creating an Islamic Republic for the subcontinent’s Muslims.
Britain is home to more than a million people of Pakistani origin, making it the largest Pakistani diaspora community in Europe.