Xiao Xiao, 30, diagnosed with ritinitis pigmentosa and hemophilia, poses for a portrait in Beijing, capital of China, Feb. 26, 2019. Due to his poor eyesight, Xiao Xiao used to be extremely anxious about his seat arrangement when he was in high school. With the help of a class teacher, he took the seat right beside the podium in front of the blakboard. The teacher's "special arrangement" was crucial for him to pass the college entrance exam. "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/Jin Liwang)
