FOR the past 19 years, I’ve had to go to the hospital every month for check-ups. It’s always the same procedure — seeing thalassaemia, ENT (ear, nose and throat) and gastro doctors.
I’ve had doctors examine my body and received blood transfusions so often that I’ve grown immune to them.
If you look only at my physical appearance, you’ll think I look like any normal person. But, I’m not.
I have not been able to attend school regularly since kindergarten, and now that I’m in university, I’m often absent from lectures.
I’m continuously on medication — several types, in fact — to keep me going. I get tired easily because I don’t have enough red blood cells in my body.
People who are not aware of thalassaemia and what the condition is always have a negative perception of it.
For example, people think I am healthy and normal, and
that I should not use elevators meant for employees, the elderly and those with special needs.
There was this Facebook post that went viral, about a 20-year-old man who looked like a 13-year-old youth. A lot of the comments by Netizens were negative until the man’s sister explained that he had thalassaemia major.
Thalassaemia is a hereditary disease passed from parents (thalassaemia carrier) to their children (thalassaemia major/intermediate) through genes.
It is a blood disorder that weakens and destroys red blood cells in the body. In Malaysia, one in 20 people is a thalassaemia carrier.
According to the Health Ministry, there are almost 600,000 thalassaemia carriers and 2,500 people who have thalassaemia major.
It’s not sympathy that we want from those around us. What we want is for people to be more understanding of our condition.
The public should read up on thalassaemia and how it affects those who have it. Get tested for thalassaemia, not just because of us, but for your future and that of your children.
Don’t cry tomorrow over the decisions you make today.
I am sure that nobody wants to be on medication for the rest of their life.
Siti Nur Azilayati Rahman Raman, Faculty of Communication and Media Studies, Universiti Teknologi Mara