Drama on rare diseases played by patients, relatives staged in Beijing

    Source: Xinhua| 2019-02-28 21:18:19|Editor: ZX
    Video PlayerClose

    (FOCUS)CHINA-BEIJING-RARE DISEASE-AWARENESS-DRAMA (CN)

    Rare disease patient Pan Longfei has his facial make-up applied before his performance in "Rare Hug", a drama on rare diseases, at Beijing Tianqiao Performance Arts Center in Beijing, capital of China, Feb. 27, 2019. "Rare Hug," a Chinese drama on rare diseases, was staged at the Beijing Tianqiao Performing Arts Center Wednesday evening to mark the 12th Rare Disease Day, which falls on Feb. 28, 2019 under the theme "Bridging Health and Social Care." The drama was played by rare disease patients in collaboration with their relatives. Assisted by two volunteer directors, the cast took part in a three-day workshop as well as rehearsals that lasted for two days, before presenting their real-life stories to the audience. Chen Meiping, one of the directors, has devoted herself to the public theatre and related arts since 2005. In late 2018, she worked with Yi'ou Wang, secretary-general of Illness Challenge Foundation, to come up with the idea of telling stories of rare disease patients with a collaborative drama. Before meeting the rare disease patients who volunteered to act in her drama, Chen was not so confident in the final result because they had only limited time for proper training. Chen was later surprised by the collaborating patients' readiness to perform and their desire to share their stories with others. "I am reassured by that desire," said Chen. "It is as if they can act themselves out immediately after they are up on the stage." The other director, Liang Wanyun, had been worried that the patients were amateurs who had not ever performed in a real drama and not sure whether they could go through the acting training in just three days. Yin Yuanyue, a 29-year-old volunteer actress in the drama who is diagnosed with muscular dystrophy, called for increased social awareness of the rare disease patient group. "What I am seeking is a sort of presence, as an actress for instance, that can act as encouragement for fellow patients who are still too afraid to reach for the outside world," she said. "It is particularly rare for a rare disease patient to rise to the stage and speak out for ourselves," said Pan Longfei, a 30-year-old volunteer actor who is diagnosed with Kallmann Syndrome. Subject to long-time isolation and misunderstanding by those around him, Pan hopes his performance could call on fellow patients to be conscious of their true selves and accept life as it is. Although rare diseases are found in a very small number of patients, most of them are incurable. Only five percent of rare diseases can be treated with medicine. About 80 percent of the 6,000 to 8,000 rare diseases known to us are gene-related, with more than 50 percent of them appearing in early childhood. According to World Health Organization (WHO) statistics, rare diseases affect a population of about 400 million worldwide, which means that for every 15 people there is one rare disease patient. Whereas in China, the number of people suffering from rare diseases is estimated to top 20 million. There are more than 100 rare disease patient support groups set up in accordance with disease categories in the country. (Xinhua/Zhang Yuwei)

    KEY WORDS:
    EXPLORE XINHUANET
    010020070750000000000000011100001378582011
    主站蜘蛛池模板: eeuss鲁片一区二区三区| 小娇乳H边走边欢1V1视频国产| 日韩国产欧美精品综合二区| 日本中文字幕网| 女扒开尿口让男桶30分钟| 国产精品日韩欧美在线| 国产人与动zozo| 人人狠狠综合久久亚洲婷婷| 亚洲一区无码中文字幕| 久久久国产乱子伦精品| 99精品热这里只有精品| 黄色a级片免费看| 精品久久8X国产免费观看| 欧美一级黄色片视频| 我要看免费的毛片| 国产精品一区二区三区高清在线| 国产亚洲美女精品久久久2020 | 天天干天天爽天天射| 国产极品美女高潮无套 | 国产欧美精品区一区二区三区| 国产亚洲综合久久| 人妻大战黑人白浆狂泄| 久久精品国产精品亚洲艾| avav在线播放| 邻居少妇张开腿让我爽了在线观看 | 222www在线观看免费| 色窝窝无码一区二区三区成人网站| 波多野结衣在线免费电影| 日本精高清区一| 杨幂被c原视频在线观看| 成人午夜免费福利| 国产特级淫片免费看| 免费精品久久久久久中文字幕| 久久精品无码一区二区www| 99热在线只有精品| 美女邪恶色动图gig27报| 最近中文字幕在线视频| 小泽玛利亚一区二区| 国产午夜亚洲精品不卡| 亚洲欧洲一区二区三区| 一区二区三区无码高清视频|