Talasemia adalah kecacatan genetik yang paling biasa didapati, dengan kira-kira 250 juta orang, 4.5 peratus daripada penduduk dunia adalah pengidap yang menghadapi ancaman maut. Pada 2010, Malaysia merekodkan 4,768 orang pesakit talasemia yang memerlukan pemindahan darah yang kerap. Manakala 5% daripada penduduknya adalah pembawa.




Monday, 14 September 2015
Day +186 after BMT

This picture of Alya was taken on April 4th of this year, at a time when we at the tail end of her stay in SJMC. Then we still didn't have any concrete indication of when she could be discharged so everyone was still on the edge, waiting patiently and hoping for the best. Everytime we look at photos from this period we feel heavy hearted, a little sad even of what she had gone through, of what we experienced. It was an extremely trying time for each of us.

But that doesn't mean we're not thankful. Instead, we feel ever stronger to support not just ourselves but also others who are going through this same journey. This post is actually a continuation of the last, where the hidden message was to exemplify the immense costs of emotions, energy, time and financing involved in curing a thallasemia patient. We decided to go through this because we were very clear of the risks and also what we wanted out of it. Therefore, come what may, we must except the consequences. Which got us thinking, what about the less fortunate?
It's so depressing to know that so many people are deprived of being cured of thallasemia because of the extremely high costs involved of not just the initial procedure but also 'maintenance' of the patient for a few years to come. And how about those who do not have access to medical science which can save the life? It is unfair but we hope this will change in the near future.
More people must get themselves checked before planning to raise a family. More people should check their children in order to avoid a painful future. Awareness must be done to educate the younger generation of the circumstances of thallasemia and what it can do to you or your children. And the powers that be must govern insurance companies to offer some sort of coverage and relief so lives can be saved.
Alya is one of a small group of ex-thallasemia individuals whom we hope can make a difference in creating awareness of the condition. One day perhaps she will return the favour of her new lease of life to others who are not as fortunate.
That, perhaps, is her destiny. And this journey of hers is her legacy.


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