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.


Amid turmoil, Lebanese Forces ministers quit coalition government

Updated 20 October 2019

Amid turmoil, Lebanese Forces ministers quit coalition government

  • The Lebanese Forces party has four ministers in the Hariri-led ruling coalition
  • Protesters in Beirut, Jounieh, Tripoli and Tyre demand that others remaining in power also quit

BEIRUT: Lebanon's "strong republic" bloc quit the coalition government on Saturday as tens of thousands of people took to the streets for a third day of protests against tax increases and alleged official corruption.
Samir Geagea, head of the Lebanese forces party, said his group was resigning from the government ahead of the 72-hour deadline that Prime Minister Saad Hariri gave to partners in power to help make his reform programs work.
Geagea's Christian party has four ministers in the coalition government, namely: Ghassan Hasbani, Kamil Abu Suleiman, Richard Qayomjian and May Chidiac.
"Since people have lost confidence in the political class, and since the people in the street represent all segments of society and because all components of the government does not want serious and actual reform, we were the first party to act with transparency and when discussing the 2020 budget, we demanded a basket of immediate reforms, but we did not feel the seriousness required," Geagea told a late night press conference that extended into the early hours of Sunday.
“We are now convinced that the government is unable to take the necessary steps to save the situation,” said Geagea. “Therefore, the bloc decided to ask its ministers to resign from the government.”
He denied "any talk of an agreement with Prime Minister Hariri regarding the resignation of ministers."
Geagea's announcement was welcomed by the protesters, who are still sit in yards in Beirut, Jounieh, Tripoli and Tyre. They demanded the resignation of the remaining in power.

'Sweeping overhaul needed'
The protesters took to the streets despite calls for calm from politicians and dozens of arrests on Friday. Many waved billowing Lebanese flags and insisted the protests should remain peaceful and non-sectarian.
The demonstrators are demanding a sweeping overhaul of Lebanon’s political system, citing grievances ranging from austerity measures to poor infrastructure.
They have blocked main roads and threatened to topple the country’s fragile coalition government.
Most Lebanese politicians have uncharacteristically admitted the demonstrations are spontaneous, rather than blaming outside influences.
Demonstrators in Beirut celebrated the news of the coalition party’s resignation, calling on other blocs to leave the government. In Tripoli, they let off fireworks.
“I am thinking maybe it’s better all the government resign,” said one protester, 24-year-old Ali. “I am thinking maybe it’s better to go to another election as people already woke up.”
The army on Saturday called on protesters to “express themselves peacefully without harming public and private property.”
Saturday evening, thousands were packed for a third straight night into the Riyadh Al-Solh Square in central Beirut, despite security forces having used tear gas and water cannons to disperse similar crowds a day before.

AI slams 'use of excessive force'
Amnesty International said the security forces’ reaction was excessive, pointing out that the vast majority of protesters were peaceful.
“The intention was clearly to prevent protesters gathering — in a clear violation of the right to peaceful assembly,” it said.
Small groups of protesters have also damaged shop fronts and blocked roads by burning tires and other obstacles.
The Internal Security Forces said 70 arrests were made Friday on accusations of theft and arson.
But all of those held at the main police barracks were released Saturday, the National News Agency (NNA) said.
The demonstrations first erupted on Thursday, sparked by a proposed 20 US-cent tax on calls via messaging apps such as WhatsApp.
Such calls are the main method of communication for many Lebanese and, despite the government’s swift abandonment of the tax, the demonstrations quickly swelled into the largest in years.
Prime Minister Hariri has given his deeply divided coalition until Monday evening to give back a reform package aimed at shoring up the government’s finances and securing desperately needed economic assistance from donors.
He held a series of meetings Saturday regarding the situation, NNA said.
Hariri’s political rival, Hezbollah leader Hassan Nasrallah, told protesters Saturday their “message was heard loudly.”
But he warned against demanding the resignation of the government — saying it could take a long time to form a new one and solve the crisis.
The current unity government has the backing of most Lebanese political parties, including Hezbollah.

Protesters attacked in Tyre
In the southern port city of Tyre, supporters of Shia politician and speaker of parliament Nabih Berri attacked protesters Saturday, a witness said, a day after demonstrators had accused him of corruption.
His Amal political party condemned the attack and called for an investigation.
More than a quarter of the Lebanese population lives below the poverty line, according to the World Bank.
Many of the country’s senior politicians came to prominence during the country’s 15-year civil war, which ended in 1990.
The promised austerity moves are essential if Lebanon is to unlock $11 billion in economic assistance pledged by international donors last year.
Growth has plummeted in recent years, with political deadlock compounded by the impact of eight years of war in neighboring Syria.
Lebanon’s public debt stands at around $86 billion — more than 150 percent of gross domestic product — according to the finance ministry.

(With AFP)