Fazalena, my story
Thirty two years ago, a baby girl was born on the 21st April, 1982. And that girl is me, Fazalena bt Johari. However at 5 month after birth I was diagnosed with Thalassaemia Major, a name foreign to the society, even to some of the medical community, at that time. Not surprisingly that my parent did not know much about the disease.
Now after 31 years of having Thalassaemia Major, I know that there are many hurdles to overcome. Starting from the time I was a kid until now, a lot of sacrifices were made. When other children were enjoying themselves, I could only observe from afar. When I was in my teens, there were more sadness to be conquered. At times I asked myself, “Why I do I deserve to be born with Thalassaemia? Is there a reason behind this?” Many times I have to be absent from classes to attend hospital appointment. Nevertheless, my teachers and friends lent me with support and help. I am grateful that they understand the condition I am in.
The hospital is a second home to me and the other thalassaemic patients. Once a month, I have to go for blood transfusion in the hospital. When I was 12 years old I have to leave the Paediatric Ward to go to the adult ward. It was very stressful for me, as I have to leave my friends in the Paediatric Ward and be among strangers. Thankfully a Thalassaemia Day Care Centre was established in the Paediatric Ward I was able to return and be among familiar faces again. Most patients gather every month. On such weekend, the Day Care Centre will be full with patients undergoing blood transfusion. For some of the patients, there are side effects if blood filter is not used. Some of the side effects include fever, nausea, drowsiness and itchiness. I too often get feverish and nauseated if I undergo treatment without using filter.
Apart from the monthly transfusion, I have to inject myself with desferal every night. When I was a kid, the task of injecting desferal was done by my father. When I was in secondary school, I began to do it myself. Of course, once in a while it was painful but as they say “alah bisa, tegal biasa”. I am now used to injection, having started since a very young age. When I was young I used to have phobia of needles but bit by bit my phobia for needles disappeared when I grew older.
I think it is hard for an ordinary person to really feel the difficulties in life faced by the thalassaemic patient. I At least I hope they understand. Now that I am living in a hostel and my friends’ opinion about my treatment especially when I inject desferal into myself worries me sometimes. I am worried that it might give a negative impression of me. However, what happened was totally the opposite. They have never teased me but instead they sympathize and help me. I am thankful that I am able to further my studies in higher education like everyone else, even though I am Thalassaemic. I know thalassaemia cannot stop me from continuing to succeed in life.
Lastly, for those patients suffered from Thalassaemia, don’t worry about what others might say about us. The fact is, we can also succeed like other people. What is the most important is to work hard and be confident in our ability. Believe that if others can do it, so can we!
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