Fighting for Survival
Hemophiliacs as a disadvantaged group have been neglected for years. Subject to excessive bleeding and pain, they live day to day
By FENG JIANHUA
‘Fits of the illness are extremely painful all over. Once, I could not sleep for 14 straight days without turning over constantly in bed. After 24 hours, one becomes delusional and hears a constant ringing sound,” recalled Kong Delin, a hemophiliac who spoke to Beijing Review. “As symptoms are irregular, we are always in a panic state, which ordinary people cannot understand,” he said.
EASING THE MIND: Dong Dong forgets his pain with the ultimate opiate—TV
Hemophilia, appearing mostly in men, is a hereditary condition characterized by proneness to bleeding. Suffers lack normal amounts of blood platelet, a substance in blood that enables clotting. Bleeding generally occurs at joints and muscles, under the skin and within organs. Injecting fresh blood or using coagulants can stop the bleeding. Lack of treatment leads to muscle atrophy, which can lead to disability or even death. However, if treatment is timely and effective, patients can function quite normally.
Statistics show that hemophilia occurs in about one out of every 10,000 people. Presently, there are about 400,000 hemophiliacs in the world, one-fourth, or about 100,000 of whom, are in China.
“As China’s medical resources are relatively limited, it is very hard for the vast majority of hemophiliac patients, especially those living in poor rural areas, to get immediate treatment. As a result, many of them became disabled; others died,” Kong said sadly.
Survival Is Hope
“I am lucky to be alive today,” Liu Qiusheng, a 41-year-old hemophiliac, told Beijing Review. Liu, despite spending the last 20 years in a wheelchair and having severe muscular atrophy in all four limbs, is hopeful and optimistic.
IT TAKES TWO: Kong Delin and his wife in their home. He uses the Internet to spread awareness of the disease from which he suffers
While learning to walk at the age of 11 months, Liu fell down and his lip started to bleed. His worried mother sent him to a local rural hospital, which failed to stop the bleeding. Then the mother brought the boy to Beijing Children’s Hospital, which diagnosed him as a hemophiliac.
“From as early as I can remember, I never had any sense of safety because whenever the illness got serious, I felt helpless, near death. My loved ones often worried about me because we could not afford to see a doctor,” said Liu.
In 1985, when Liu lost the ability to use his legs, the 22-year-old man made his living by repairing radios and television sets at home. Business was OK. However, Liu, always conscientious, often undercharged customers or did work for free, so it was hard for him to make enough money.
Liu’s disease is a heavy burden for his whole family. His father has been working for years, weathering diabetes and high blood pressure, to make money to treat his son’s illness. His mother has battled fits of depression, resulting in mental disorder. Every time Liu’s illness acts up, his younger brother becomes so frightened that he is rendered speechless.
During the Spring Festival last year, Liu suddenly suffered a brain hemorrhage and almost died. While being treated in a hospital, Liu lost consciousness and had temporary memory loss, not even recognizing his family. He did recognize a girl named Zhou Hongyan, who was renting a room at his home at the time. He called her name whenever he would wake. “I felt like a drowning child. Zhou’s visits saved my life,” Liu recalled.
Liu fell deeply in love with Zhou and the two became closer. “To be honest, I mostly only sympathized at first. But slowly I felt I could not leave him and he would not leave me too,” Zhou said, now married to Liu. The couple is now living in a spacious house, which is divided into two rooms. One is a bedroom and the other serves as a grocer. “We are living from hand to mouth with the help of this grocer,” said Zhou.
The two are happy with what they have, and would be content with things not getting worse. “I hope our life gets better of course, but it would be better than anything if Liu’s disease does not flare up,” said Zhou.
Liu added, “With her by my side, my heart is at ease.”
Wise Young Dong Dong
Seeing the cute, lively four-year-old Dong Dong, it is hard to connect the boy with hemophilia. He sits on the sofa with TV remote in hand, changing the channels again and again. Hearing the adults talking, he turns the volume up to avoid the subject.
IN IT TOGETHER: Liu Qiusheng and his wife, Zhou Hongyan
One day when Dong Dong was six months old, he received a vaccine. His entire arm and hand became swollen, discolored and severely tender. Dong Dong’s parents thought there must have been a problem with the injection. After a period of time, the couple had him get another injection to be sure. But the same thing happened. The boy’s parents started to worry and immediately took him to a hospital in Shanghai. Dong Dong was diagnosed with hemophilia.
Due to the nature of their son’s disease, Dong Dong’s parents pay close attention to his every action. They have covered all the furniture and walls in their apartment with foam rubber and have a thick, plush carpet to minimize chances of him bleeding.
The boy’s aunt said that every time Dong Dong’s illness flares up, the little boy can only manage one word: “painful.” When this does occur, his parents administer an injection, which thickens the blood. When this reporter asked Dong Dong about his episodes, his spirit sunk and he could only solemnly mutter: “painful.” Dong Dong has come to recognize the disease and asks for the injection himself when necessary. He cooperates very well for a boy of his age.
Children Dong Dong’s age usually attend kindergarten, but the boy’s illness has forced his parents to keep him home for tutoring.
“Other aspects of his life are quite normal. But whenever I see an episode, I get worried. I have no idea what is in store for the boy’s future,” said Dong Dong’s aunt.
It Doesn’t Hurt to Try
Among hemophiliac patients, the 42-year-old Kong Delin is a relatively successful one. This comes from his painstaking tolerance and strong will.
Kong knew of his disease at a young age. At 17, a university enrolled him, majoring in electronic technology. Just two years later, he had to drop out due to the deterioration of his health. He went to live with his grandparents in Shanghai. Kong’s father supported him with little money from a distant city.
“I vowed to change my fate and was determined not to completely rely on others,” Kong recalled.
Living in cosmopolitan Shanghai, Kong was aware of the importance of studying English, and he did so by himself. Kong frequently went to the Bund, a popular spot with foreigners, to practice oral English. He eventually applied this knowledge to research hemophilia on English-language websites.
After the age of 30, due to frequent bleeding in the joints and lack of medical treatment, Kong had increasing difficulty in moving. Kong, still in the wheelchair a friend gave him, managed to speculate on stocks and teach an English class. Not long after, Kong had his own savings for the first time.
In 1998, Kong began surfing on the Internet. His disability has disallowed him to do many things, so the Internet provided the best way to know the world. Kong eventually used his savings to buy a set of computer parts, with which he assembled a computer.
“When I first used the Internet, it was like my horizons suddenly widened. I was so excited,” said Kong.
Kong has come to know many hemophiliacs through the Internet. He is well known among them for his rich knowledge of the disease and his kindness. For a long time, Kong had no stable work and spent all day reading information online and answering his friend’s questions. In addition, Kong often reports problems to government departments and nongovernmental organizations in an effort to garner support for sufferers of hemophilia.
“If you don’t try, perhaps no one would care about you. Maybe no one would understand you. I know my own effort is limited. But I can do some good,” Kong said.