When he was a boy, Guan Tao couldn’t run around and play.There was always a danger he might fall and scrape his knee, get a bruise or cut his finger, triggering bleeding that was hard to stop.
A hemophilia patient since childhood, 42-year-old Beijing native Guan has a serious case. Hemophiliacs lack blood clotting factors, so internal and external bleeding is a problem.
In an effort to help patients get better treatment and lead better lives, Guan in 2000 founded a nongovernmental organization, Family for Hemophilia Patients.
Hundreds of people have been helped with donations of blood-clotting factor, funds for medical treatment, and social support.
There are several types of hemophilia and cases range from mild to severe.With treatment, which can be expensive, many patients can lead relatively normal lives.
It affects mostly males since both hemophila A (80 percent of patients) and B (20 percent) are recessive X-linked genetic disorders. Both lack functional clotting factors, Factor VIII for type A and Factor IX for type B.
Patients can bleed spontaneously internally after strenuous activities. Repeated bleeds can damage joints and legs and cause other problems.
It is treated by injections of clotting factors, either as a regimen, or when bleeding occurs.
In China, the number of cases is not known but it’s estimated to be five to 10 among 100,000 people or one birth among 5,000.
Shanghai Daily spoke with Guan at a recent forum on hemophilia in Shanghai.
Q: When were you diagnosed and how are you doing?
A: I was diagnosed when I was seven months old. Because of the disorder, I only was in school for three months. When I was seven, my legs couldn’t stand straight because of bleeding, and I lost my left leg when I was 12. I spend my days in wheelchair. My arms bleed frequently and I suffer arthritis.
Q: How did you start Family for Hemophilia Patients?
A: Before 2000, few people in China knew about hemophilia, like other rare ailments. Patients faced huge difficulties and days of internal bleeding cause extreme pain. Proper treatment can give patients ordinary lives, but many rural people cannot afford long-term expensive care. I always wanted to help.
Q: How does your “Family” help?
A: Before last year when the organization was registered with civil affairs authorities, we could only donate blood coagulating factor. More than 200 patients received our help over 12 years. We opened branches around the country, with patient files.
Since last year, it’s easier to raise funds and cooperate with foundations. Last year we received 550,000 yuan (US$89,840) to help 107 patients. Our programs sponsor child patients and educate people about the disorder. Around 3,000 patients are registered with us, increasing by 100 each month. We have volunteers around the country.
Q: What’s patients’ biggest problem?
A: Economic difficulties. Since patients need expensive life-long treatment, many patients delay or give up treatment, which causes disability or death. I have met thousands of patients with varying degrees of the disorder and all the adults who are moderately to severely affected are disabled.
Although the central government has enacted politics to help, many localities do not implement them because of financial problems. Medicine is also in short supply and production involves both the government and drug companies.
Q: Before 2000, there were reports some hemophilia patients were infected with HIV through tainted blood products. What’s the situation?
A: Artificial clotting factor VIII replacement is the most effective treatment. Earlier, the factor was extracted from blood and in the 1990s some patients were infected by injections. As far as we know, all HIV carriers and AIDs patients have been treated. Artificial clotting factor is now common and we haven’t heard of new HIV infections for a long time.
Q: What’s your hope for your “Family?”
A: We hope to help as many patients as possible and I believe promoting education is urgent. Since the damage from internal bleeding is often invisible and the pain not as acute as in better-known diseases, it’s very hard to persuade people to donate. We hope more people help us publicize the disorder and the pain it causes.