‘No centralised system’ for haemophilia patients
Sufferers may bleed for a longer time than others if they suffer an injury, as they lack a protein needed for blood clotting
Seven-year-old Lucius Lam is no different from other boys his age - always cheerful and curious about everything around him, he loves to ride his scooter and jump around.
But, he was born with haemophilia, a genetic bleeding disorder that impairs his blood’s ability to clot normally.
With little or no clotting factor, a protein needed for normal blood clotting, a haemophilic may bleed for a longer time than others after an injury.
They may also bleed internally, especially in the knees, ankles, and elbows. Such bleeding can damage joints and can be life-threatening.
While Lam can attend physical education lessons at school, he needs a regular injection of a fixed dose of clotting factor in order to maintain the factor level in the body, to reduce the risk of bleeding and damage to the joints.
Lam’s father, Henry Lam Chun-shing, said his son was initially afraid of the injection but he had become used to it. It is boys like Lam who doctors hope will benefit from a centralised system for treating the disorder.
In Hong Kong, it is estimated there are between 200 to 300 people with haemophilia.
Dr Godfrey Chan Chi-fung, the head of the Department of Paediatrics and Adolescent Medicine at the faculty of medicine of the University of Hong Kong, said although the city’s health care system had been able to look after the overall needs of patients with haemophilia, care had been fragmented across different hospitals.
“The treatment method was not uniform,” said Chan. “Since there is no centralised system, we can’t give directions to other hospitals. It’s up to the attending doctors.”
He said he had high expectations for the Hong Kong Children’s Hospital, set to open in Kai Tak in 2018, to help centralise treatment protocols for haemophilia patients.
Chan added it was possible for doctors to discover the disorder during prenatal examinations and parents have a choice to deliver the baby or not.
