Perseverance of man with hemophilia inspires others

    By Zou Shuo in Changsha | China Daily | Updated: 2024-05-28 09:54
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    Xiao Tan poses at different tourist sites while traveling in the country. CHINA DAILY

    In April 2022, due to a particularly painful period of constant bleeding, he posted a video on Douyin revealing his condition and that he feared it might take his life.

    The post provoked an outpouring of compassion and encouragement, with some commenters sharing their own stories of their struggles with different illnesses.

    "I was a very timid person and did not want to tell other people about my illness, yet the warm words from unknown strangers online were like sunlight shining through the darkness, helping me get through the dark days," he said.

    Since then, Tan has been more open about telling his stories of battling the disease.

    He has posted videos of him injecting himself with plasma and receiving treatment from doctors.

    Many of his fans are also hemophilia patients or have family members with the condition. Tan gives suggestions on getting treatment while also offering them psychological support.

    Due to the excessive internal bleeding he has experienced over the years, Tan's knees, ankles and pelvis have all been damaged.

    Despite this, he was still able to travel to the Xizang autonomous region by himself in April.

    "I have been bedridden for most of my life, and I really wanted to visit Xizang. The view was so mesmerizing and even better than I have seen on TV and online," he said.

    "Although my legs hurt every step I take, I still want to encourage my fans so that they can also travel and see the bigger world if they take regular preventive therapy."

    Tan now has more than 290,000 followers on Douyin, but despite his family being in debt to cover his medical bills, he said he is reluctant to monetize his account.

    "There are many possible emergencies accompanying the disease, and someday I might die if there is a hemorrhage from sudden injuries, but I still want people around me and my fans to be happy every day," he said.

    "I do not hate or blame the disease. I have accepted it. It has become a part of me."

    Someday, there might be a cure for the disease, he said. He is still hopeful, as people can move forward when there is hope.

    "If it's possible, I want people to know me not because I have the disease. And a healthy me can become a doctor to save others from disease."

    Ma Danyi, 19, from Changshu, Jiangsu province, is a fan of Tan on Douyin.

    She said Tan's videos have helped her greatly with her depression and bipolar disorder.

    "I like him because although he is in a dire place, he still helps others find light in life," Ma said. "I want him to not lose hope as he is in a better condition than before."

    Wen Ying, 40, from Taizhou, Zhejiang province, is another fan of Tan on Douyin.

    She came across his videos in September and felt compassion for him. She said she first learned about the disease from his videos and livestreams.

    "He is a very nice person and lives his life positively despite so much suffering. He deserves to get better and be happier," Wen said.

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