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(单词翻译:双击或拖选)
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.
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。
Mustapha Redouane happily accepted the agreement. He knew his mother’s idea would silence school officials’ worries about his condition.
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。
The boy has a rare genetic2 disorder3 called xeroderma pigmentosum, or XP. It can make sunlight and other forms of ultraviolet light extremely damaging to the skin and eyes.
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。
The disorder is more common in North Africa than in other areas of the world.
这种疾病在北非比在世界其他地区更为常见。
Now 8, Mustapha has already had 11 operations to remove cancerous growths from his skin.
为移除皮肤上的癌细胞，现在8岁的穆斯塔法已经做了11次手术。
His family is among thousands around the world struggling with XP.
他的家人是全球与XP疾病抗争的数千人之一。
What is XP?
XP是什么？
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.
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。
People inherit XP from their parents. As a result, the condition is more common in populations where marriage between relatives is high, Kraemer said. Affected4 children inherit two copies of a mutated gene1, one from each parent.
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。
A 2016 Moroccan government study estimated that about 15% of marriages in the country are between family members.
2016年摩洛哥政府的一项研究估计，该国的家庭成员之间通婚约占15%。
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.
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。
Without protection, few XP patients in Morocco live long enough to reach adulthood5, El Fatouikai said. Living with the condition is particularly difficult in developing countries and in rural areas, she explained.
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。
The truth is, she said, “We only have prevention as a possible treatment. These children ... have to avoid even minimum sun exposure.”
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。”
The main prevention measures include avoiding the sun, wearing protective clothing and using sunscreen products.
主要的预防措施包括避免晒太阳、穿防护服和使用防晒产品。
Lack of understanding
了解不足
Twenty-five-year-old Fatimazehra Belloucy has had skin cancer and other problems because of XP.
25岁的法蒂玛泽拉（Fatimazehra Belloucy）因为XP患有皮肤癌和其他疾病。
“If only people made it easier. Their words hurt. I feel entirely6 alienated7,” she said, describing how she faces frightened looks and hateful comments as she passes by people.
“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。
Her family limits interactions with her, fearful that her condition could spread to others.
她的家人尽量避免跟她交流，担心她的病情会传染给其他人。
“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.
“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。
“It hurts me that I have to see little kids suffer because of lack of awareness8,” says Habib El Ghazaoui.
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。”
El Ghazaoui resigned from his position as a veterinarian. He decided9 to help children with XP after learning that his daughter Fatimazehra had the disorder.
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。
Ghazaoui leads the Association for Solidarity10 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.
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 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, noted11 NIH researcher Deborah Tamura.
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。
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 schooling12.
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。
“She’s sad, but I can’t risk taking her to school where there isn’t any kind of protection,” he said.
“她很伤心，但我不能冒险带她去没有任何保护措施的学校，”他说。
“But she needs an education,” said her mother, Maria El Maroufi.
“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。
Words in This Story
ultraviolet – adj. used to describe light that cannot be seen and that are slightly shorter than the rays of violet light
inherit – v. biology : to have a disease or condition because of the genes13 that you get from your parents when you are born
pediatric – adj. or, related to or affecting babies or children
dermatology – n. a field of medicine dealing14 with the skin, its structure and diseases
alienated – adj. describes a person who feels they no longer belong in a particular group, society, etc. — + from
awareness – n. knowing or understanding that something is happening or exists
hint – n. a small piece of information that helps you guess an answer or do something more easily
tailor – n. a person whose job is to make clothing for an individual
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gene
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| n.遗传因子，基因 | |
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genetic
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| adj.遗传的，遗传学的 | |
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disorder
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| n.紊乱，混乱；骚动，骚乱；疾病，失调 | |
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affected
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| adj.不自然的，假装的 | |
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adulthood
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| n.成年，成人期 | |
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entirely
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| ad.全部地，完整地；完全地，彻底地 | |
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alienated
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| adj.感到孤独的，不合群的v.使疏远( alienate的过去式和过去分词 )；使不友好；转让；让渡（财产等） | |
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awareness
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| n.意识，觉悟，懂事，明智 | |
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decided
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| adj.决定了的，坚决的；明显的，明确的 | |
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solidarity
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| n.团结；休戚相关 | |
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noted
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| adj.著名的，知名的 | |
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schooling
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| n.教育；正规学校教育 | |
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genes
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| n.基因( gene的名词复数 ) | |
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dealing
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| n.经商方法，待人态度 | |
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