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SINGAPORE: Imagine having to worry about bleeding to death whenever a minor injury occurs.
For haemophiliacs like Sean (not his real name) who was born with the condition, any bump or bruise could be life threatening.
A clumsy trip may be all it takes to trigger prolonged bleeding in the joints and muscles. Even an innocent bump on the road could result in nasty bruises.
Put simply, haemophilia is a genetic disorder of the blood-clotting system that affects about one in 10,000 people.
According to Dr Tan Hooi Hwa, president of the Haemophilia Society of Singapore, there are currently about 400 haemophiliacs in Singapore.
Normal human blood contains 13 clotting factors that help the body to stop bleeding. A person with haemophilia is born with an absent or deficient clotting factor, which prevents the blood from coagulating. Spontaneous bleeding may also occur even without injury.
It only affects men
Haemophilia which can be classified as either type A (deficiency of clotting factor 8) or B (deficiency of clotting factor 9) only affects males.
Female babies who inherit the haemophilia genes become "carriers" who do not display any symptoms of the condition.
The condition is typically passed down from mother, who is a carrier, to son. Occasionally, however as in Sean's case haemophilia can occur due to a spontaneous gene mutation.
Dr Tien Sim Leng, senior consultant of the department of haematology at Singapore General Hospital, estimated that about one or two babies are born each year with the condition.
For such babies, the symptoms "may manifest at birth through excessive umbilical bleeding", said Dr Tien.
But more often than not, he added, the signs such as unexplained bruises, prolonged bleeding from cuts, and pain and swelling in the joints — show up when the child becomes more active and starts to crawl at about nine months old.
When a child is born with haemophilia, it "affects his life as well as the lives of the people around him completely", said Dr Tan.
He added that "psychologically, their mothers, who are carriers, may also feel guilty about passing on the gene to them".
As a child, Sean recalled how his parents who were constantly worried that he would injure himself would cushion hard surfaces with cotton padding.
While other babies took their first tumbles and falls, Sean was always in his mother's arms.
The upbeat 25-year-old joked about how he became "horribly fat" during his primary school years because he "would be sitting in a corner with another kid who had asthma" during PE lessons.
Living with haemophilia
The common misconception is that haemophiliacs are crippled for life by their condition. But, in reality, they can lead normal lives if they receive prompt and adequate treatment whenever a bleed occurs, said Dr Tien.
Dr Tien advised against contact sports, but having some form of exercise such as swimming can help strengthen the muscles and reduce joint bleeding.
When Sean learnt how to manage his condition in his adolescent years, he began playing basketball. He also took up jogging and swimming, and went to the gym. Today, he leads a happy and normal life and is currently working in the media industry.
"I try not to let my condition affect me. I don't let the problem control me I control it," he said.
Sean manages his condition by promptly injecting himself with factor concentrates at the first signs of bleeding a form of home treatment that most haemophiliacs turn to.
Called "self-infusion", it allows patients to continue to lead a normal life, said Dr Tan. But it is very expensive. In fact, Sean estimated that his parents have spent a few hundred thousand Singapore dollars on his treatment.
The Haemophilia Society of Singapore offers subsidies (from public donations) to patients. Even so, patients can expect to pay more than S$100 every time they bleed.
"A person with relatively serious haemophilia may bleed three to four times a month. If you do the math, you'll know why cost is a major problem for patients," said Dr Tan.
To learn more about Haemophilia or to make a donation, you can log on to www.haemophilia.org.sg or email secretary@haemophilia.org.sg. - TODAY/ar
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