[ti:Sunlight Hurts People With Rare Condition] [by:www.51voa.com] [00:00.00]更多听力请访问51VOA.COM [00:00.04]Nadia El Rami made an agreement with the head of her son's school: [00:07.38]Seven-year-old Mustapha would attend classes at the school, [00:13.23]but only if he studies inside a cardboard box. [00:18.17]Mustapha Redouane happily accepted the agreement. [00:23.72]He knew his mother's idea would silence school officials' worries about his condition. [00:32.08]The boy has a rare genetic disorder called xeroderma pigmentosum, or XP. [00:40.54]It can make sunlight and other forms of ultraviolet light extremely damaging to the skin and eyes. [00:51.08]The disorder is more common in North Africa than in other areas of the world. [00:58.19]Now 8, Mustapha has already had 11 operations to remove cancerous growths from his skin. [01:08.08]His family is among thousands around the world struggling with XP. [01:15.40]XP affects about 1 in 10,000 people in North Africa. [01:22.64]That is more than 10 times the rate in Europe and about 100 times the rate in the United States. [01:32.90]Those numbers come from Kenneth Kraemer, a researcher at the U.S. National Institutes of Health. [01:42.72]People inherit XP from their parents. [01:47.04]As a result, the condition is more common in populations where marriage between relatives is high, Kraemer said. [01:58.77]Affected children inherit two copies of a mutated gene, one from each parent. [02:08.28]A 2016 Moroccan government study estimated [02:13.40]that about 15% of marriages in the country are between family members. [02:22.28]Fatima El Fatouikai is a pediatric dermatology specialist at Ibn Rochd University Hospital in Casablanca. [02:33.84]She said that living in an area where the sun shines year-round [02:40.32]makes people with the disorder more likely to get skin cancers. [02:46.93]Without protection, few XP patients in Morocco live long enough to reach adulthood, El Fatouikai said. [02:57.50]Living with the condition is particularly difficult in developing countries and in rural areas, she explained. [03:07.16]The truth is, she said, "We only have prevention as a possible treatment. [03:13.74]These children ... have to avoid even minimum sun exposure." [03:21.32]The main prevention measures include avoiding the sun, [03:26.02]wearing protective clothing and using sunscreen products. [03:32.64]Twenty-five-year-old Fatimazehra Belloucy has had skin cancer and other problems because of XP. [03:42.26]"If only people made it easier. Their words hurt. I feel entirely alienated," she said, [03:50.38]describing how she faces frightened looks and hateful comments as she passes by people. [03:58.84]Her family limits interactions with her, fearful that her condition could spread to others. [04:07.16]"No one would take care of me, so I had to do it myself," said Belloucy, who completed high school. [04:15.80]She is now taking university classes. She hopes to find work that will let her help people with the condition. [04:25.48]"It hurts me that I have to see little kids suffer because of lack of awareness," says Habib El Ghazaoui. [04:34.92]El Ghazaoui resigned from his position as a veterinarian. [04:40.09]He decided to help children with XP after learning that his daughter Fatimazehra had the disorder. [04:49.47]Ghazaoui leads the Association for Solidarity with Children of the Moon [04:55.83]from his house in the town of Mohammedia. [05:00.68]He spends his time visiting families, giving out donations, and pressuring the government to take action. [05:10.56]XP support groups are increasingly sharing advice on the internet and social media. [05:17.77]Last year, they held a meeting in London to share "practical hints" about special clothing, [05:26.42]window protections and meters to measure light, noted NIH researcher Deborah Tamura. [05:35.12]The donations from Ghazaoui's group reach families like those of Said El Mohamadi, [05:42.62]a tailor in the Moroccan city of Salé. [05:46.68]His 6-year-old daughter has the condition. [05:50.58]His family is still debating the issue of schooling. [05:55.68]"She's sad, but I can't risk taking her to school where there isn't any kind of protection," he said. [06:04.88]"But she needs an education," said her mother, Maria El Maroufi. [06:11.84]I'm John Russell. [06:13.72]And I'm Anne Ball. 更多听力请访问51VOA.COM