As a newborn, Jim (not his real name) would refuse to be fed and cried constantly, driving his parents to despair. One day when he was four months old, his eyes became "fixed, not moving" and he turned "white", said his father. He and his wife rushed their son to the hospital.
Tests showed he had bleeding in the brain. It took doctors a few days to find out it was due to haemophilia, a rare condition where the blood does not clot normally.
He suffered another two bleeding episodes in his brain before turning one. After the third and most severe episode, he was put on his current prophylaxis regimen as a preventive treatment. It involves injections of clotting factors every other day. His mother, a nurse, administers the injections at home through a port fitted near his collarbone.
Today, Jim is a healthy four-year- old who attends mainstream nursery school. Like him, many young patients with haemophilia are enjoying better health with the help of preventive treatment. Compared with older patients, they have fewer bleeding episodes, improved joint health and an overall better quality of life. They also have fewer absences from school, say doctors.
This treatment method has been used in KK Women's and Children's Hospital (KKH) since 2010. The hospital currently treats more than 40 children with haemophilia. Most are on preventive treatment. Another 20 are being treated at National University Hospital. Some can participate in physical education classes, which was not possible before prophylaxis was available, said Dr Joyce Lam, a consultant at KKH's haematology/oncology service.
If chronic injury can be prevented in childhood, the children will continue to have healthy joints when they grow up. However, not everyone can afford this treatment all the time. Older patients learn to be careful not to get hurt and some practise short-term prophylaxis.
Mr Wong Yang Ping, 25, received prophylaxis treatment during national service, when it was free for him. Now it is too costly for him.
Mr Wong, who runs an IT business, has a bleeding episode four to five times a month, but does short-term prophylaxis before certain sports to reduce risk. Treatment costs vary according to severity, and can go up to $6,000 a month.
Currently, about 60 per cent of patients at Singapore General Hospital are fully or partially funded by Medifund. The Haemophilia Society of Singapore has endowment funds to help subsidise medical treatment for its members.
Like Mr Wong, Mr Juraimi Hussin, 51, has learnt to be more careful. In his 20s, he almost died when he got into a fight and cut his hand. He also used to play football and suffered bruising and bleeding and, now, his joints are damaged. He cannot afford prophylaxis treatment, so he takes more care. "Now I don't play sports. I just watch sports on TV. It's also exciting and gets my heart rate up," he said.
This article was first published on July 28, 2015.
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