A journey of rare courage
Liu Kaixin wants to spread awareness about her condition so that other patients get treated earlier
When Liu uploaded her first video on Feb 28, 2023 — Rare Disease Day — she simply wanted to document and share her life, hoping to challenge public stereotypes about patients with rare diseases. Unexpectedly, the video quickly went viral, bringing viewers, recognition and then the complicated experience of becoming visible in public.
"I have never felt that I was seen because my life is especially hard," she said. "What is truly hard is for those who were never given the chance to be seen at all — those who were already abandoned, already given up on, before anyone noticed them."
For Liu, visibility is not mainly about sympathy. It serves a more practical purpose. "If one more person sees me," she said, "then maybe someone with the same disease won't have to wait 20 years for a diagnosis. Maybe we'll face a little less inconvenience in everyday life."
Her videos reflect that idea quietly. She does not present herself only through the language of pain. She talks about everyday life, friendship, jokes and the small details of ordinary days. It's not just a patient on the screen, but also an artist, a writer, a stand-up comedian in a wheelchair, and a woman thinking aloud.
In her second book, Liu wrote about how easily people mistake a fragment for the whole. "We each look at the world and at other people like blind people touching an elephant," she wrote. "Maybe you have not touched, or did not dare to touch, the difficult parts. That is fine. But please do not therefore say that my life is easy." Then comes the sharper line: "If all you have touched is the elephant's ear, do not say the elephant is shaped like a fan."
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