Thalassaemia major is a genetic, blood disorder which affects more than 1 lakh, children in the country. Children suffering from the disorder cannot produce haemoglobin, which carries the oxygen that to be breath in, to the various part of the body. These children are born with the disorder, and will survive only if given regular blood transfusion. Transfusion need to be given every 15 days on an average, throughout their lives.
Repeated blood transfusions result in an undesirable build-up of iron in the body, which can be fatal. The child has to take costly injection every day to dispose this excess iron. This injection is given by a special infusion pump, over a period of 8-10 hours every day. In most cases the injection is switched on before the child those to sleep and detached the next morning. An oral drug has been developed for iron disposal which has replaced the injection therapy. This drug is relatively affordable. But the drug does not work with some children.
Thalassaemia is a anaemic blood disorder. A person suffering from this disorder has defective manufacture of hemoglobin and ineffective erythropoiesis ie. manufacture of blood cells in the bone marrow. Thalassaemia is one of the most common inherited disease.This disorder is geographically common in the people of Mediterranean, African and Southeast Asian origin. The cause of the disease is not known other than the fact that it is an inherited disorder.
Thalassaemia can be Beta-Thalassaemia, and Alpha-thalassaemia. These can be further broken into major and minor thalassaemia.
Thalassaemia Major is the severe type where the patient has acute anaemia. The patient has frequent leg ulcers, enlarged spleen and jaundice. Ineffective erythropoiesis causes abnormal skeletal development. The long bones suffer frequent fractures and growth is stunted. Iron deposits in the heart muscles can cause complications and heart failure. Iron deposits in liver lead to dysfunctioning of the liver. The life expectancy of Thalassaemia patients is greatly diminished.
Thalassaemia Minor patients have slight anaemia but lead normal lives. Such patients at times do not even know they are carrying the disease. It is discovered only after a special blood test. Sometimes a Thalassaemia Minor patient discovers the disease after his/her child has Thalassaemia Major. Therefore it is of prime importance to know if you have Thalassaemia Minor when you want to start a family. This is particularly so in families and certain communities where the conditions are more common.
Below are certain questions you may want to ask.
Is it important to know whether one is Thalassaemic?
Yes. Especially if you belong to some community where the condition is seen. The following will answer some of your questions.
I am a healthy human being. Do I need to know about Thalassaemia?
Absolutely yes! You could be a carrier of Thalassaemia (also called Thalassaemia Minor).
Now, what is that?
You know, you must find out whether you are 'carrier' of Thalassaemia.
40 Million Indians are Thalassaemia Minor
Because if you are a 'carrier' and your spouse/spouse-to-be is also one, then your future child could be inherit the condition.
How can this happen if both me and my spouse are healthy?
In most cases, 'carriers' of Thalassaemia are healthy. They pose no risk to themself. But it both partners in a marriage are 'carriers', there is a 25% chance, during each pregnancy, that their child will be a Thalassaemia Major.
So what should I do?
You must do a blood test and find out if you are a 'carrier'? And it is not very costly test.
If you are not a 'carrier', you don't need to do anything.
And if I am a 'carrier'?
If you are a 'carrier', you must check whether you spouse is also a 'carrier'.
And if my spouse is not a 'carrier'?
You don't need to worry at all.
And what if we are both 'carriers'?
You must realised that there is a 25% chance that your child will be a Thalassaemia Major.
Does that mean that we cannot have a child if we are both 'carriers'?
That surely if the safest option. You could probably adopt a child.
But what if we want our own biological child?
You could have your own biological child. But you must inform your 'gynaec' that you and your spouse and both 'carriers' of Thalassaemia. You must insist with the doctor for a Pre-Natal test on the foetus. The Pre-Natal test will tell you if foetus is affected (Thalassaemia Major) or non affected (Thalassaemia Minor or normal). And you must go ahead with having the child after taking a conscious decision accepting the possible consequences
But how come nobody knows about this?
It is sad that nobody knows about this. And they only come to know that they are 'carriers' after they have given birth to a Thalassaemia Major child. By which time it is too late and their life is shattered. There are several social organisations who work in this area who can help you to conduct awareness camps, blood tests, etc.You can even talk to Jeevan Jyoti Blood Bank who will help you in this regards.
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