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: 国产精品不卡高清在线观看| 成人精品一区二区户外勾搭野战| 任你躁国产自任一区二区三区 | 免费看h片的网站| 好男人官网资源在线观看| 久久精品中文字幕无码| 欧美黄色免费在线观看| 四虎成人永久地址| 四虎在线最新永久免费| 夜夜高潮夜夜爽国产伦精品| 中文字幕版免费电影网站| 最近中文字幕高清中文字幕电影二| 亲胸揉胸膜下刺激网站| 老子影院午夜理伦手机不卡| 国产成年无码久久久免费| 97精品视频在线观看| 强行被公侵犯奈奈美| 久久午夜无码鲁丝片| 欧美军同性videosbest| 人人婷婷色综合五月第四人色阁| 老外毛片免费视频播放| 国产女精品视频在ktv| 2021久久精品国产99国产精品| 好男人好资源在线观看免费 | 免费人成在线观看网站品爱网| 西西人体高清444rt·wang| 国产精品成久久久久三级| ww在线观视频免费观看w| 无码无套少妇毛多18pxxxx| 亚洲av永久无码精品三区在线4| 波多野结衣中文无毒不卡| 农村老熟妇乱子伦视频| 色悠久久久久久久综合网伊人 | 伊人久久大香线蕉亚洲| 老头一天弄了校花4次| 国产大学生系列| 69成人免费视频| 国产精品自产拍在线网站| 99这里只有精品| 好好的曰com久久| 中国一级特黄特级毛片|