Ever since i went to Medical school here in sabah, the only expertise i automatically get is in Thalassemia. I have met a lot of Thalassemia cases and i have seen the consequences of it.
Lot of people are talking about preventing this inherited diseases. Everywhere we can see the campaign of preventing Thalassemia by doing screening and everything.
However, not so many people are looking into those person who already has the diseases. Those who cannot prevent it. Those who suffer because of the consequences done by their ignorance parent.
My point is, we should look more into this people. How to manage them, how to increase their quality of life. It was like people start to talk about preventing thalassemia and forget those who had it as they are like dying with no hope of a normal life.
It is a wrong idea to classified them as terminal. They don't. We can manage and make their life much better and as normal as others. We have plenty of money to buy medication for them, but we don't have enough blood i guess.
So blood is the most important thing to be focus regarding this problem. We need people to donate their blood for them. We need people to think and somehow be in their shoes for once and give those numerous blood in your body.
Common reason for people to avoid blood donation:
1. Scared (don't know why they are scared compared to those who are dying without enough blood)
2. I have low blood volume. ( Then you are not human. God created us with enough blood to supply our body. Losing up to 300 mg will not harm us)
3. I cannot donate blood ( most of this people gave vague reason)
4. I'm menstruating ( It was the endometrium which shed off during menstruation, not a running blood like the real bleeding)
5. I'm afraid of putting up weight after i donate blood (common myth among people in our culture is that we will gain dramatic weight after we donate blood. We did not look on the fact that how many fast food and rice these people ate after, or even before they donate their blood)
6. i don't know where to donate my blood ( this is acceptable. Actually we can donate blood at the hospital. Just go there and tell the registration counter, they must refer you to the appropriate place. No need to wait for the campaign)
7. Don't bother/ ignorance ( just wait until you can see the clear picture of this situation which you may not see until the end of your life. So just pray that somehow you will).
I guess no one can stop thalassemia from spreading in Sabah. Lack of education and services to screen for thalassemia limit the control of the disease. I hope that someday, somehow, someone can provide cure for this problem. Which is impossible except the genetic engineering and genetic manipulation is possible.
p/s: I heard that there is blood substitute developed in the west. It is like a recombinant hemoglobin like substances produce by DNA engineering or from bovine or swine. Using this technology, we do not need people to donate blood anymore. We just make how many blood substitute that we can. It was a very good development.
This products are being use by south africa currently. People say that it was a human trial. But i try to search for the info and it was clearly that it was used there for human. Maybe within this few years we can see the products being commercialize through out the world.