On the eve of the World Hemophilia Day, a physician yesterday drew attention to the predicament of the nation’s more than 1,300 hemophiliacs, some of whom suffer as many as 30 episodes of spontaneous bleeding per year.
Hemophilia is a rare genetic bleeding disorder in which blood does not clot normally due to the lack of sufficient blood-clotting proteins called coagulation factors. There are two common types of hemophilia, hemophilia A, which involves a lack of clotting factor VIII; and hemophilia B, which manifests because of a deficiency of clotting factor IX.
Hemophilia affects mostly males.
Photo: Wu Liang-yi, Taipei Times
“Research shows that patients with hemophilia A experience an average of 14.4 episodes of spontaneous bleeding each year, while those with hemophilia B suffer about 8.6,” Chang Gung Memorial Hospital physician Chang Hung (張鴻) told a news conference in Taipei yesterday afternoon.
Chang, who works in the hospital’s Hemophilia and Blood Clotting Medical Center, said that up to 80 percent of bleeding episodes occur into joints, especially knees (45 percent), elbows (30 percent) and ankles (15 percent), followed by muscles.
As repeated bleeds into the same joints could cause synovitis and arthritis and result in chronic swelling or deformity, many hemophiliacs suffer some level of disability, Chang said.
There are two types of treatment for the disease, prophylaxis, a preventive treatment, and on-demand therapy.
Before prophylaxis treatment was covered by the National Health Insurance (NHI) program last year, Chang said most financially disadvantaged hemophiliacs with moderate or severe hemophilia would wait until they experienced pain or a bleeding episode to receive an injection of the clotting factors they lacked.
Chang cited the case of a middle-aged hemophiliac as an example.
The man had suffered more than 30 episodes of spontaneous bleeding per year since he was five months old, Chang said, adding that the illness and damage to the man’s joints had prevented him from doing any exercise except strolling.
“Since he started receiving the injection regularly last year, he has scarcely experienced any bleeding episodes,” Chang said. “With a total left-knee replacement in December last year, he is no longer confined to indoor activities and has set his mind on trying a bicycle trip in the near future.”
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