When I was only a few months old, a five-syllable word crudely entered my life and took control of it.
“Thalassaemia”
This seemingly Martian term is not as alien as it may appear. In fact, this term describes a blood disease that is carried by over sixty million people in the world out of which about 1.4 million live in Pakistan.
Doctors discovered soon after my birth that I had the worst form of Thalassaemia, a form that renders the victim helpless and completely dependent on blood from other people: beta-Thalassaemia major.
What would have been a happy time in an infant’s life turned into absolute darkness. You see, Thalassaemia, in simple terms, is a genetic mutation that affects blood cells rendering them unable to carry oxygen. While a red blood cell should be plump and red, mine is shrivelled and useless. The single change in the nucleotide sequence in my DNA that causes this monstrous disease leads to a multitude of problems. Ever since I was born, I had to go to various hospitals to receive blood transfusion every month. And every day at home, I took shots to counteract the iron deposits that have resulted from these transfusions.
Thalassaemia is a daunting disease. The victim must receive blood from donors, but in doing so, he receives an excess of iron through the transfusion. The very process that is saves a patient’s life is the very one that is slowly killing them.
Though there are drugs that help patients excrete iron, the sad fact is that not all of it ever exits the body. Iron deposits form in the pituitary gland, the liver, the pancreas, and eventually, the heart. So while the victims of Thalassaemia usually do not die from a lack of functioning blood cells, they eventually die from heart complications caused by the iron.
My infancy was the most difficult part of my life. Doctors were unable to find suitable veins in my tiny arms, so they stabbed my feet with needles. Needles often fell out during the course of the transfusion. At home, I continued to take shots every day to counter the deadly iron deposits. By the age of five I had taken more shots than most adults do in their lifetime.
I still remember my elementary school days. I was often ostracised because of the frequency of my doctor appointments, and I missed up to three days of school per week. When I realised that the blood that was being pumped into my body was from other living people, I felt like a vampire.
It was during my elementary school days that I resolved to repay all of my blood donors for this generosity, to pay back all my doctors for all the work they had put into me.
I realise now that Thalassaemia does not have to be a monster to me – to us. I say this to other children with Thalassaemia. Let us turn this weakness into strength. Let us have Thalassaemia hold us back no more rather let it be our motivation to succeed. It is because of Thalassaemia that we have learned to endure pain, now let it be the reason we learn to lead a productive, happy life.
There is something I want you all to take away today. Always embrace obstacles, for obstacles are actually valuable lessons cleverly disguised. Without confronting obstacles, you will never grow. Obstacles will never crush you as long as you have the resolve to overcome them.
I am currently under treatment with Jamila Sultana Foundation, Chaklala Scheme 3. I’m now 18 and preparing for my 2nd year exams. One day I will be an architect, I’m already interning with the design department of one of the biggest residential schemes in the country. Dream big… I know I do.
