Get screened for thalassaemia

FOR the past 19 years, I’ve had to go to hospital every month for a check-up. I see the thalassaemia, ear, nose and throat, and gastroenterology doctors. I’ve had doctors examine me and receive blood transfusions so many times I’ve grown immune to the process.

If you look at my physical appearance, you’d say I’m normal. But I’m not. I’m a university student but I have to skip classes a lot, and I have been doing this since I was in kindergarten. I also have a few types of medicines to take. I get tired easily because I don’t have enough red blood cells in my body. I have to admit that I and many who are in the same boat as me are being seen as lazy and irresponsible by those who are not aware of our condition.

People who don’t know about thalassaemia think I am a healthy student so there are times when staff in my university look at me with disapproval when I use the lift provided for them, elderly people and persons with disabilities.

I once read comments posted on Facebook pillorying a 20-year-old groom because he looked like a 13-year-old. People continued to post negative comments about him until his sister explained that he was thalassaemia major patient.

Thalassemia is a blood disorder passed down through families (inherited) in which the body makes an abnormal form of haemoglobin. Haemoglobin is the protein in red blood cells that carries oxygen. The disorder results in large numbers of red blood cells being destroyed, which leads to anaemia. (MedlinePlus: https://www.nlm.nih.gov/medlineplus/ency/article/000587.htm)

One in 20 Malaysians is a thalassaemia carrier. According to the Health Ministry, there are between 600,000 and one million Malay­sians who are thalassaemia carriers and there are almost 2,500 thalassaemia major patients here.

Imagine feeling constant pain in your hand where the vein has to be pierced every time you have a blood transfusion to replace your damaged blood cells. It can get swollen sometimes.

It’s not sympathy we want from the people around us but more understanding and awareness of our situation. People should learn about thalassaemia and get tested if they have any concerns. Also, look up the Health Ministry’s website MyTalasemia (http://www.mytalasemia.net.my/) to get an overview of this condition and its prevalence in our country.

SITI NUR AZILAYATI RAHMAH RAMAN

Semester 3 Student

Shah Alam