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.


Jordan criticizes Israel over Al-Aqsa Mosque changes

Updated 18 August 2019

Jordan criticizes Israel over Al-Aqsa Mosque changes

  • Palestinians welcomed the Jordanian position but expressed concerns over a decline of support for Amman’s custodianship of the holy places at Al-Aqsa

AMMAN: Jordan has stepped up its diplomatic pressure on Israel, demanding that they do not change the status quo at Jerusalem’s Al-Aqsa Mosque.

Zaid Lozi, director-general of Jordan’s Foreign Ministry, summoned Israeli Ambassador to Jordan Amir Weissbrod to protest Israel’s actions in Jerusalem.

According to Petra News, Lozi told the envoy that recent remarks by Israeli Public Security Minister Gilad Ardan over changing the status quo at Al-Aqsa Mosque are unacceptable. Lozi added that the mosque is a place of worship for Muslims only.

Jordanian Foreign Minister Ayman Safadi addressed a group of EU ambassadors in Amman and “stressed the urgency of effective international steps against Israel’s violations of Holy Sites in occupied Jerusalem.”

Safadi told Arab News that the situation in Jerusalem is challenging and must be addressed. He said that he will present a detailed report on Jordan’s position to Parliament on Monday.

The ministry denounced the Israeli authorities’ closure of the mosque’s gates and demanded that Israel respects its obligations in accordance with international humanitarian law.

HIGHLIGHT

• Muslims insist that all 144,000 square meters of the UNESCO World Heritage Site are a single unit that has belonged to them for 11 centuries.

Hatem Abdel Qader, a member of the Jerusalem Islamic Waqf, told Arab News that Israeli authorities had been attempting to enforce major changes at the mosque.

“Security forces barged into the mosque yesterday. They went to the Bab Al-Rahmeh Mosque where they confiscated carpets and the closet where shoes are kept.”

Jordan’s diplomatic statements follow comments by Ardan, who said that Israel is disappointed with the current state of affairs at Al-Aqsa Mosque.

According to Israeli officials, the mosque area is sovereign Israeli territory, despite it being administered by Jordan. Muslims insist that all 144,000 square meters of the UNESCO World Heritage Site are a single unit that has belonged to them for 11 centuries.

Qader said that Palestinians welcomed the Jordanian position but expressed concerns over a decline of support for Amman’s custodianship of the holy places at Al-Aqsa.

“There appears to have been a gradual deterioration of Arab and Islamic support to Jordan. It surprises me that Muslims have been quiet, perhaps they see an advantage if Jordan’s role is diminished? If true, this would be dangerous.”

Qader, a former minister in the Palestinian government and a current member of the Fatah Revolutionary Council, told Arab News that Jordan’s position “guarantees continuation of the status quo.”