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Living with haemophilia

A lively, creative bunch of kids at a haemophilia camp proved that the disease is no barrier to leading a full, healthy life.

THE children and teenagers at the camp looked and behaved like any other boys. On the surface, no one would have been able to tell them apart from other children and teenagers.

Yet, these ones have inherited a blood disorder called haemophilia; the blood lacks a protein – Factor Eight (VIII) or Factor Nine (IX) – and therefore cannot clot properly, leading to spontaneous or prolonged bleeding, especially in the muscles, joints and internal organs. When this happens, ugly bruises develop.

This condition, which is also marked by painful and inflamed joints, affects primarily males while the carriers are females.

Co-hosted by the Taiwan Haemophilia Society and Bayer HealthCare, the 3rd Asia Pacific Haemophilia Camp was held in Uni-Resort of Mawudu in Hsinchu county, Taiwan, recently. It brought together those affected by the condition, to learn and share about haemophilia, and build friendships with fellow patients. The camp also aimed to motivate, encourage and empower patients and their caregivers. Over 100 participants from Malaysia, Indonesia, Thailand, Taiwan and China attended the camp.

Facing the diagnosis

How can one tell if a bruise is just a normal bruise or whether it is due to haemophilia?

“There are two ways to be diagnosed. If you are born into a family that knows they have haemophilia, your parents are at least a bit prepared for it,” says Brian “BJ” Ramsay, a haematology specialist nurse from New Zealand, in an interview at the camp. “If a family has a history of haemophilia, the baby is diagnosed at birth.

“In the first year of life, babies don’t do an awful lot: they lie still, they’re picked up, fed and put down. So the actual bleeding risk is quite low,” adds Ramsay.

Parents who know the diagnosis from the time of the baby’s birth have about a year – before the baby starts crawling and walking – to get used to the diagnosis.

“But for those who don’t get the diagnosis at birth, and haemophilia is new to them, it is a lot more difficult. When it gets picked up as the baby starts moving around and bruising, it is then that the problem begins,” says Ramsay.

“Treatment of small children can be difficult. You need specialist doctors and nurses to get venous access. Babies’ veins are very small; sometimes it can take two, three, even four attempts to get a needle in. Treatments can be as traumatic as the bleeding.

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