Hemophilia Home is a nonprofit established to improve the quality of life for patients with hemophilia by collecting knowledge on hemophilia and helping destitute patients.
On March 30, 2001, my little boy, Xiaofan, came into this world. We were all very happy to have such a cute boy. However, as he grew up, something strange would always occur: Xiaofan always fell down as he tried to walk. Unlike those of the other children at his age, his bruises and swelling took a much longer time to go down. At first, doctors said it was due to a capillary problem and would be fine as Xiaofan grew up. Later, though, Xiaofan complained that his ankles hurt, and when we took him to see a doctor again, he was diagnosed with chronic periostitis and required much rest. We didn’t take it seriously until 2006, when Xiaofan got a fracture that refused to heal. We took him to Jiangxi Children’s Hospital, and unfortunately, Xiaofan was diagnosed with hemophilia. Since we were not aware that Xiaofan had hemophilia during his rehabilitation period, he didn’t receive Factor VIII on time, which led to frequent bleeding. In 2011, we had to take him for synovectomy in Beijing. Xiaofan got well after the surgery, but his condition relapsed this year. Because local hospitals have no Factor VIII, we had to buy them from pharmaceutical agents with much higher costs. How we hoped we could get factors from the local hospital so that our medical insurance could afford them! We really hope national medical policies will improve so that we can have more resources to help Xiaofan as well as other hemophilia patients.
Original Article written by Zheng Liu, translated by Shi Shi Ma, edited by US interns Lauren Kam and Ally Nguyen.
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