People with hemophilia should seek prophylactic treatment as early as possible to reduce the risk of irreversible joint damage, a doctor told an event at Mackay Memorial Hospital yesterday.
The event in Taipei was held ahead of World Hemophilia Day on April 17 and sought to motivate hemophiliacs to exercise regularly, as this would help increase joint and muscle stability and function, and reduce the risk of spontaneous bleeding, the hospital said.
A 29-year-old man surnamed Tseng (曾) said he was diagnosed with hemophilia A when he was an infant, but he only began regularly receiving prophylactic factor replacement about two to three years ago.
Photo courtesy of Shen Pei-yao via CNA
He said his family was always worried about his condition and he was asked by a teacher to not take part in physical education classes in school.
However, after he began the treatment, which involves two intravenous injections of clotting factor concentrate per week, as well as before physical activities, he took up diving, Tseng said.
Hou Jen-yin (侯人尹), a physician in the hospital’s Division of Pediatric Hematology-Oncology, said hemophilia is most often an inherited genetic disorder that prevents the blood from clotting after an injury.
Most people living with the condition are cautious when engaging in physical activities, as any injury could cause serious bleeding, Hou said.
Repeated bleeding into joints affects 70 to 80 percent of people with severe hemophilia, potentially causing joint damage, he said.
Among them, the average age of the first instance of bleeding into a joint is 18 months, so they should receive prophylactic treatment from early childhood, Hou said.
About 80 percent of children with hemophilia at the hospital have received prophylactic treatment, most of them starting from infancy, he said.
Some infants are diagnosed with hemophilia immediately after birth, Hou said, adding that unusual swelling or bruising usually indicate the condition.
Others are diagnosed with hemophilia as toddlers, with their parents realizing unusual bruising after their child begins to crawl, he said.
Bleeding in the digestive system can cause black stool or bloody urine, and bleeding in the brain can cause changes in consciousness, sleepiness and repeated vomiting, he said.
The event was also attended by retired professional baseball player Kuo Hong-chih (郭泓志), a former MLB pitcher for the Los Angeles Dodgers.
Acting as ambassador for raising hemophilia awareness, Kuo said that many hemophiliacs are afraid to exercise, but doctors suggest that they do certain exercises regularly to strengthen their muscles and protect their joints.
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