Sunlight Hurts People With Rare Condition
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.
1.lack of 缺乏
He cannot do the work for lack of skill.
2.rural areas 农村地区
These plants have a tendency to grow in the more rural areas.
3.social media 社交媒体
We have all witnessed the power of social media.
4.giving out 分发
There were people at the entrance giving out leaflets.
5.No one would take care of me, so I had to do it myself.
take care of 照顾
You have to learn to take care of your possessions.
We need to take care of our bodies.
6.He spends his time visiting families, giving out donations, and pressuring the government to take action.
take action 采取措施
We had to take action to protect the proprietary technology.
We must take action to deal with the problem before it spreads to other areas.
纳迪亚·埃尔·拉米(Nadia El Rami)与儿子所在学校的校长达成了一项协议：7岁的穆斯塔法在学校上课时必须呆在一个纸箱里学习 。
穆斯塔法·雷杜安很高兴地接受了协议 。他知道母亲的想法会平息学校人员对他病情的担忧 。
这名男孩患有一种罕见的遗传性疾病——着色性干皮病，简称XP 。阳光和其他形式的紫外线会对患者皮肤和眼睛造成极大的伤害 。
在北非，每1万人中就有1人感染XP 。感染率是欧洲的10倍多，是美国的100倍左右 。这些数字来自美国国立卫生研究院的研究员肯尼斯·克雷默 。
XP会遗传给下一代 。克雷默表示，因此，这一疾病在亲属间通婚率高的人群中更为常见 。受影响的儿童会遗传到父母双方的两种变异基因 。
法蒂玛（Fatima El Fatouikai）是卡萨布兰卡Ibn Rochd大学医院的儿科皮肤科专家 。她说，生活在一个终年阳光明媚的地区，患有这种疾病的人会更容易患皮肤癌 。
法蒂玛表示，在没有任何保护措施的情况下，摩洛哥很少有XP患者能活到成年 。她解释说，在发展中国家和农村地区，这种疾病患者的生活尤其困难 。
事实上，她说，“我们只有把预防作为一种可能的治疗手段 。这些孩子……必须尽量避免阳光照射 。”
25岁的法蒂玛泽拉（Fatimazehra Belloucy）因为XP患有皮肤癌和其他疾病 。
“如果人们能正视这种疾病就好了 。他们的言语伤害 。让我感觉完全被疏远了，”她描述了自己路过时别人恐惧的表情以及充满仇恨的评论 。
“没有人会照顾我，所以我只能照顾自己，”高中毕业的贝洛西说 。她现在正在修大学课程 。她希望找一份工作，让她能帮助患有这种疾病的人 。
哈比卜·艾尔·加扎韦（Habib El Ghazaoui）说：“看到孩子因为别人缺乏认知而受苦，这让我很伤心 。”
加扎韦辞去了兽医的工作 。在得知女儿法蒂玛泽拉患有XP后，他决定帮助患有XP的孩子 。
加扎韦在Mohammedia镇的家中领导着“团结月亮儿童协会” 。他花大把时间探访患病家庭、捐献善款并敦促政府采取行动 。
XP支持组织越来越多地在互联网和社交媒体上分享建议 。去年，他们在伦敦举行了一次会议，分享关于特殊服装、窗户防护措施和测量光线的仪器的“实用性提示”，NIH的研究员黛博拉·塔莫拉(Deborah Tamura)说道 。
加扎韦组织的善款送到了默罕默迪（Said El Mohamadi）这样的家庭手中 。默罕默迪是摩洛哥塞尔市的一名裁缝 。他6岁的女儿也患有这种疾病 。一家人仍在就上学问题陷入两难 。
“可是她又需要接受教育，”她的母亲玛丽亚·埃尔马鲁菲(Maria El Maroufi)十分苦恼 。