A Home for Hemophiliacs
The Hemophilia Home of China is a website that has become a space for mutual support and help. It is also a way for hemophiliacs to be understood by the outside world
By FAN REN
The emergence of hemophilia in China is not a new thing. That it has received the attention of the outside world in the past two years can be, to a large degree, attributed to one particular website—The Hemophilia Home of China. The site’s Chinese hemophiliacs have caught the attention and won the support of the World Federation of Hemophilia, headquartered in Canada.
SITTING DOWN ON THE JOB: Chu Yuguang (left), Guan Tao (middle) and Kong Delin, despite their difficult illness and financial limitation, have connected thousands of hemophiliac sufferers with each other
One day in the latter half of 1999, a hemophiliac from Shanghai, Kong Delin, was searching for resources on hemophilia on the Internet, when he was strongly attracted to a webpage made by another hemophiliac, Liu Yitao. It struck an emotional chord within Kong and he proceeded to contact Liu via email.
Due to repeated hemorrhaging from Liu Yitao’s joint cavity, his bone, muscle and knee ligament had been deteriorating. He could no longer walk. Despite this, he still rode his motorbike between his printing shop and home, relying on his own drawing skills to make advertisements.
Kong had a high regard toward Liu after he knew of his circumstances. It was at this time that Kong’s desire to establish a website for hemophiliacs sprouted. Later, Kong found Chu Yuguang and Guan Tao, hemophiliacs from Beijing, and told them of his idea. Kong was surprised at their instant embrace of this idea, and they took immediate action.
The first obstacle facing the budding website was lack of funds. Treatment is expensive, so none of them had much money to start. They looked to business for assistance. In an emotional exchange, a factory generously donated some cash, which provided their seed funds.
On shoestring budget preparations, and with only Kong and a staff of three or four, the website for hemophiliacs—“The Hemophilia Home of China”—got off the ground in May 2000. After the website was up and running, Kong Delin employed his English aptitude, translating positive experiences of foreign hemophilia treatment into Chinese and posting them on the site. He also contacted medical specialists and posted explanations to an array of questions that patients raised.
Not long after the site was open, it drew the attention of numerous hemophiliacs who logged onto the site frequently to better understand the disease. The website allows hemophiliacs to awaken their lives through sharing unique experiences among people in similar difficulties. They can open their hearts on the Internet to a sympathetic audience.
“Hemophiliacs lead a solitary life. With our own website, it is like we have found a ‘home.’ Here we can speak uninhibitedly, and thoroughly get everything off our chest,” website staffer Chu Yuguang, told Beijing Review.
The website has no fixed office, Chu continued. It has four staff altogether, but spread out in three different cities. They have to work at home. Every Saturday night is the time for hemophiliacs to meet on the Internet, according to Chu.
“This is an exuberant time for us. Even though many of us have not met, on the site, we feel like old friends. After such trauma from the sickness, it’s really hard to express such joy,” Chu said.
Based on the site, Chu Yuguang, Kong Delin, Guan Tao and a few others also established a nonprofit organization, the China Hemophiliac Association. “This organization enables hemophiliacs more intimate communication,” Chu, also director of the organization, said. There are now up to 2,000 hemophiliacs who have registered with the group.
Chu says the main tasks up to this point has been to register patients, organize activities, publicize information regarding hemophilia, seek donations and get the government to pay attention to hemophilia.
Guan Tao, the head secretary of the organization, is responsible for getting the word out to the general public. He is only 33 years old, 22 of which he has been confined to a wheelchair. Until now, he has had no job. Guan, who relies solely on his parent’s meager pension to get by, has poured his whole being into the hemophiliac association. Giving his time to serving others has given Guan a feeling of self worth. Yet, he feels helpless and in the dark about his own future.
Chu says that local governments have begun to pay attention to hemophiliacs because of his organization’s efforts, adopting measures of assistance. Through involvement and help, the plights of many hemophiliacs have been made more tolerable.
“This line of work has made me realize that many hemophiliacs are in awful situations. We, as a limited force, merely want society to notice and support us,” Chu Yuguang said.
The morning of his interview, due to a sudden flare of symptoms, Chu, who had been able to walk independently, could only clutch his crutches. “If I could get good treatment, I would have been able to throw out these crutches for your interview today,” he told this reporter, half jokingly.
The Hemophilia Home of China has made an impact in its brief existence, specifically with the World Federation of Hemophilia. In July 2000 and May 2002, the global hemophilia group invited Chu and several other association members to participate in a training conference, along with giving much needed financial support.
“We would like to do many things, but financial constraints are the biggest hurdle,” Chu said.