Thalassaemia Gathering

Yesterday we saw again the biannual celebration of the Thalassaemic kids in town. Celebrated with joy and laughter, it's another event to remind us about these lil kids who were born with Thalasemia. Thalassaemia, a word from the Greek, Thalassa simply meaning 'sea'. It is an inherited disease and estimated to live 1 in 20 of the population in the country, with a higher incidence over the east part. Thalassaemia (Thal) can be simply divided into carrier and major. Major requiring regular blood transfusions while the carrier state remain undiagnosed and living among the population. Without blood test, one could not easily know the status of the carrier, which again if both parents were undiagnosed/diagnosed carrier of this gene, have a 25% chance of having a Thal major child and a 50% of chance of getting carrier baby with the remaining 25% normal child.


The unfortunate Thal major children of course will live a life in out the hospital due to regular blood transfusion as frequent as 2-weekly not mentioning enduring the needle prick sensation. They also will need supplement of desferral, an iron chelating solution to excrete the excess iron which is accumulated in the body as a result of multiple blood transfusion. If the excess iron left accumulated in the body, it will cause alot of harm as it would be deposited on the multiple vital organs in the body and surrenders to malfunction which will ultimately result in death. The desferral in the meantime available in oral and injectable form but due to expensive cost, most are on injectable form which requires 5-6 days a week. Imagine poking yourself everyday and you would know why you won't like it.


Let's move back to the event. The kids were so involved and we were literally absorbed into their world. Being shy outside the real world, they exposed their hidden talent during this very day. They started singing songs, dancing, then we proceeded to the gift giving ceremony, photo-taking, luncheon and then the meeting. I am part of the local Thalassaemia society and one of the committees. Being so absorbed with work, sometimes event like this lets me sit back and give me sometime to see things at other perspective and work on things that I might not realize happening around me. It just requires very little of my time but makes a huge difference to others. Doesn't that sound like a good deal?


The committee is planning for a blood donation drive for the public next month at a sponsored avenue in a bigger city. The drive plans to fetch as many bloods as possible for these kids here to replenish the depleted bloods in the bank. We have been facing a real shortage of bloods in the whole country and that is why, if everyone got screened for thalassaemia, the incidence of having thalassaemia major children might be reduced as this is a preventable genetic disease.


When the pictures during their previous trip to the zoo were displayed, there was one when Doz whispered to his fellow friend next to him, she's gone already. Liz passed away in the beginning of last year while Lenny few months ago due to the complications of iron overload. This group of people have been playing together and from his remark, death is not a question anymore. Perhaps he understood that this word can never escape his life and that gives me the impression that he will live his life happy today no matter what. Can the normal people like us face this bravely as they could? But one thing for sure, we can prevent this from happening to the unborn child if we go for the test today. I have tested, have you? For more information, click here.