- 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 a carrier of Thalassaemia.
Because if you are a ‘carrier’ and your spouse/ spouse-to-be is also one, then your future child could be in for serious trouble.
Your child could be a Thalassaemia Major.
- What does that mean?
It means that your child will survive only if given regular blood transfusions throughout its life.
- 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 themselves. But if 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 then?
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 your 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 ‘carrier’?
You must realize that there is a 25% chance that your child be a Thalassaemia Major.
- Does that mean that we cannot have a child if we are both ‘carrier’?
That surely is 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 are 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 the foetus is affected (Thalassaemia Major) or non – affected (Thalassaemia Minor or Normal). And you must go ahead with having the child only if the foetus is not Thalassaemia Major.
- But how come nobody knows about this?
It is said 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.
- My God! Then everybody must check himself/ herself for Thalassaemia Minor?
You bet! There are more than 40 million ‘carrier’ of Thalassaemia in India. You could be one of them. And if you don’t take the necessary precautions, you could be punishing your child and yourself in the process.
- How do I check myself for Thalassaemia Minor?
You need to do a specific blood test for Thalassaemia Minor. This is the simple blood test.
- How much time will it take to do the test?
Only 2ml of blood will be taken from your body. This should take less than a minute. The blood sample will be subjected to tests and the reports will be made available to you.
- How often do I need to do the test?
You need to do the test only once in your lifetime. Your status will respect to Thalassaemia will never change in your lifetime.
- What is Thalassaemia Major?
Thalassaemia Major is a genetic, blood disorder which affects more than 1 lakh children in the country. Children suffering from this disorder cannot produce haemoglobin, which carries the oxygen that we breathe in, to the various parts of the body. These children are born with the disorder, and will survive only if given regular blood transfusions. And, the transfusions 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 an injection everyday to dispose off their 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 goes to sleep and detached the next morning an oral drug has been developed for iron disposal which can replace the injection. This drug is relatively affordable. But the drug does not work with some children.
- What is the situation in Mumbai?
There are almost 1000 children suffering from Thalassaemia Major, who receive blood transfusions at various day care centers in Mumbai. These centres may be attached to hospitals or private clinics. The children are registered here and do not have to go through the process of admission. On the day of transfusion, they are given that dates for the nest transfusion. This helps in minimising the absence from the school. Day care centres monitor the child on every aspect of the treatment.
It is important that these day care centres, where the children have to go every 15 days on an average, are as comfortable as possible. A clean environment, air conditioning, television , music system, reclining chairs, toys, books etc can make their painful visits to the Day Care Center as comfortable and pleasant as possible.
- What is the role of the government?
The government of Maharashtra has been playing a very proactive role in the fight against Thalassaemia. The Government has:
a) Ensured that all children suffering from Thalassaemia Major receive blood free of cost. For this purpose the government has:-
• Issued identity cards to all children
• Identified and instructed blood banks which will provide blood
b) Constituted Thalassaemia Committees in all district places with the objective of providing comprehensive treatment.
c) Formed Thalassaemia Clinics.
d) The Government is also supporting NGOs, which are working in the field of Thalassaemia and assisting them in creating awareness about Thalassaemia Minor.
- How can I help the cause of Thalassaemia?
a) Get yourself tested for Thalassaemia Minor
b) Contact citizen for detection camps for Thalassaemia Minor at your office, residential area etc
- For care of Thalassaemia Major children:
a) Donate Blood regularly
b) Contact citizen for Blood Donation Camps at your office, residential area etc
c) Provide financial support for iron tablets/ injections
d) Provide financial support for notebooks/ uniforms
e) Organize entertainment outings for Thalassaemia Major children
f) Provide air conditioners, music systems, reclining chairs, story books, indoors games etc. for Day Care Centres