Yet, for many Malaysians, this is their fate. In fact, about 5% of the population is afflicted with thalassaemia, an inherited blood disorder that drastically changes how an individual lives his or her life.

On World Thalassaemia Day, FMT Lifestyle spoke to haematologist Dr Henning Loo about this common inherited blood disorder.

Loo explained that thalassaemia is a red blood cell disorder in which the patient’s production of haemoglobin is affected by either a deletion or mutation in their alpha or beta gene.

Haemoglobin is a protein in red blood cells that carries oxygen to various parts of the body.

“If there’s a lack of the beta chain, we call it beta thalassaemia. A lack of the alpha chain is called alpha thalassaemia,” he said.

In thalassaemia patients, their red blood cells break down much faster than expected. A normal red blood cell can last for about three months, but those in a thalassaemia patient’s cells have a stunted lifespan.

Since one’s haemoglobin is made up of two beta chains and four alpha chains, a lack of either one is diagnosed as alpha or beta thalassaemia, based on the deficiency of the chain.

Loo added that when it comes to the severity of this disorder, it depends on whether an individual has thalassaemia minor or thalassaemia major.

“Patients with just the thalassaemia trait are usually quite well and can live a normal life. However, when they fall sick, they might exhibit anaemia symptoms like tiredness, reduced effort tolerance and even palpitations. They may also develop stones in their gallbladder and jaundice, he added.

Patients with thalassaemia major, on the other hand, require lifelong blood transfusions from as young as two years old as their red blood cells last for under a month. These blood transfusions must also be conducted on a regular basis.

Sadly, frequent blood transfusions come with a risk. First, there’s the worry of the accumulation of iron in their vital organs such as their heart, liver and endocrine glands.

When this happens, there’s the risk of multiple organ dysfunction, resulting in the patient requiring iron chelation to expel the excessive iron.

Who is most at risk of having thalassaemia?

This blood disorder is especially common among the Chinese and Malay population, as well as some indigenous groups in Sabah and Sarawak.

“Whatever trait or form of thalassaemia one has, you would need a family history of thalassaemia for it to happen.”

Loo also addressed the fear that a thalassaemia carrier cannot have children with another thalassaemia carrier for fear that their offspring will be born with the disorder too.

“While this is true, with the advancement of technology, even two patients with thalassaemia traits can still get married and have children.”

However, he stressed that they would need help from an obstetrician, who will extract a good sperm and the ovum from the parents and fertilise these in vitro, after which it is transferred back to the mother’s uterus.

Loo said this process would prevent the baby from being afflicted with thalassaemia major. The other alternative would be to conceive naturally and obtain a sample of the amniotic fluid for tests.

All in all, Loo concluded that the public should be aware of this blood disorder to reduce the chances of giving birth to babies with thalassaemia major.

“Thalassaemia patients used to only live to 20 or 30 years old, but now with better medical treatment they can live up to 40 or 50. However, that’s still quite short compared to the normal adult population.”

Head to the ministry of health’s website for more information.