Haemophilia is a rare bleeding disorder affecting less than 0.01 per cent of Malaysians, requiring daily medical care and continuous vigilance to prevent complications. Patients...
Controversy rages over release of Netflix’s ‘Squid Game 2’ trailer featuring veteran actor Song Young-chang who was convicted of underage prostitution Ipoh Timur MP Howard Lee Chuan How and Vice President of the Haemophilia Society of Malaysia , Shakir Aziz have a conversation after an interview with Malay Mail at Parliament in Kuala Lumpur October 29, 2024. — Picture by Yusof Mat Isa Haemophilia is a rare bleeding disorder affecting less than 0.
KUALA LUMPUR, Nov 4 — Growing up, Shakir Aziz said he was always told that he needed to avoid doing certain things to protect his health. All he knew was that he is different, these restrictions were limiting. Shakir is one of the around 1,400 haemophilia patients in the country — a rare and often misunderstood condition affecting less than 0.01 per cent of the population.
Shakir, now the vice-president of the haemophilia Society of Malaysia , explained that haemophilia is often invisible to the untrained eye and leads to misunderstandings. Ipoh Timur MP Howard Lee Chuan How, one of the lawmakers championing the issue, said efforts are being put into raising public awareness, so the public understand that patients are not looking for any special treatment.
An innovative alternative now offers a subcutaneous injection lasting up to three weeks, providing a more convenient and cost-effective option, especially for children and those with vein-access issues. Policies currently provide support, with RM25 million allocated for rare diseases this year, but advocates like Lee argue this funding is insufficient for the growing needs.
“Living with haemophilia doesn’t mean we can’t have ambitions or live well. We just have to take different precautions and adapt. Some of us even go on hikes or adventures, but we do it in our own way.”
Hemophilia Health Issues Blood Disorder Howard Lee
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