To raise awareness of hemophilia, the Taiwan Society of Thrombosis and Hemostasis yesterday invited people with the condition to tell their stories.
The call came on World Hemophilia Day, which this year has the theme of “Adapting to Change, sustaining care in a new world.”
Peng Ching-tien (彭慶添), a hematologist at China Medical University Children’s Hospital and chairman of the group, said that 1,500 people in Taiwan have a severe form of the inherited genetic disorder in which the blood does not clot properly.
Common symptoms are unexplained easy bruising, swelling and stiffness of the joints, and excessive bleeding from injuries, he said.
Shen Ming-ching (沈銘鏡), a professor emeritus at National Taiwan University’s College of Medicine who is known as “the father of hemophilia treatment in Taiwan,” said that misconceptions about the condition used to be common and treatment not affordable to many with hemophilia.
The condition was in 1995 added to the National Health Insurance (NHI) program’s list of catastrophic illnesses, he said, adding that treatment has since then been fully covered.
New treatment techniques and preventive measures have since been developed, Shen said.
Regular prophylactic injections can be given to prevent or reduce the frequency of bleeding episodes, Shen said.
Nonfactor replacement therapy for hemophilia has also been developed, he said, adding that a gene therapy is in clinical trials.
Wang Hua-kuan, a man in his 50s who was diagnosed with severe hemophilia at the age of one, said that he often had unexplained bruises, stiffness and joint pain when growing up.
He often needed injections, he added.
As his treatment was not covered by the NHI, his parents sold five houses to pay for it, Wang said.
When he could no longer walk due to serious joint deformities at the age of 25, he also had suicidal thoughts, Wang said.
However, Shen, who was his doctor at the time, convinced him to undergo hip and knee replacement surgeries, Wang said, adding that he practiced walking with crutches while in great pain after the surgeries.
“Every day is a task for me,” he said, adding that he wept on the day he could finally walk on his own again.
Wang now insists on walking 10km every day to maintain his leg muscles, Wang said.
Others with the condition should try to go outdoors more often, enjoy being active and not give up, he said.
Peng said that people with hemophilia are often worried about injuries that might cause strong bleeding, but inactive lifestyles might lead to joint and muscle deterioration.
Those with the condition should try to practice sports such as swimming, badminton or table tennis where the risk of injuries is low.
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