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Thalassaemia can be Fatal ?

You can be a Carrier of Thalassaemia even if you are healthy.
There are 40 Million Indians who are Carriers of Thalassaemia.
Approximately 1 in 25 Indians is a Carrier of the Thalassaemia gene.
Almost all these Carriers are health, like you and me.
A Carriers of Thalassaemia is also called a Thalassaemia Minor.
Doing a test for Thalassaemia can be the most important decision of your life.
Sindhis, Punjabis, Gujaratis, Lohanas, Kutchis, Agris, Mahars, Bengalis and certain Muslim communities.
 

I am healthy human being. Do I need to know about Thalassaemia?

 
Absolutely Yes! You could be a 'Carrier' of Thalassemia!


Is that a problem?
 
No Thalassaemia- Minor is not a Disease.
But Thalassaemia - Major is a fatal disease. If you and your spouse are Carriers, then your future child could be in for serious trouble.      
 

How?
Your child could be Thalassaemia Major.
 

What does that mean?

It means that your child will survive only if given regular blood transfusions throughout its life. Every year 10,000 Thalassaemia Major children are born in our country.

 

How can this happen if both I and my spouse are healthy?

In most cases, Carrier of Thalassaemia are healthy. They pose no risk to themselves. However, if both partners in a marriage are 'Carriers', there is a 25% chance during each pregnancy, that their child will be Thalassaemia Major.

If only one parent has Thalassaemia trait there is a change that 50% of their children will have Thalassaemia trait. None of their children will have Thalassemia Major.

If both parents carry Thalassemia trait, there is a chance that 25% of their children can have Thalassamia Major and 50% of their children will have Thalassemia trait.
 
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 'Carrier'?

 

And if my spouse is not a Carrier?

 

You don't need to worry at all.

 

And what if we both are Carriers?

 

You must realize that there 25% is chance that your child will be Thalassaemia Major

 
Does that mean that we cannot have a child if we are both 'Carriers'?

No, You can have a child. You must inform your gynecologist that your spouse and you are both 'Carriers' of Thalassaemia. You must insist on a prenatal test which will tell you if the foetus is affected (Thalassaemia Major) or not.

 

What should one do to know whether the foetus is Thalassaemia Major or not?

Prenatal diagnosis of B-Thalassemia and other hemoglobinopathies such as Hbs & HbE, which are prevalent in certain communities in India , is carried out by Amplification Refractory Mutation System PCR (ARMSPCR):

This can be performed either on Chorionic villus Samples at 10-12 weeks of gestation, Amniotic Fluid at 16-18 weeks or on Fetal Blood at 20-22 weeks of gestation.
And if the foetus is detected Thalassemia Major, you may abort the foetus rather than giving birth to a Thalassemia Major child.


But how come nobody knows about this?

It is sad that nobody knows about this, Most come to know that they are 'Carriers' after they have given birth to a Thalassemia Major child. By this time it is too late and their lives are shattered.


My God!! Then everybody must check himself/herself for Thalassaemia?

 

You bet !! There are more than 40 million 'Carriers" of Thalassaemia in India.You could easily be one of them. If you don't take the necessary precautions, you could be condemning your child to a life of misery.

Thalassemia-Major Child needs frequent blood transfusions, which have their own risks, and then also child does not live long...


How do I test myself for Thalassaemia?

 

You need to do a specific Blood Test for Thalassemia.


How much time will it take to do the test?

Only 2ml of blood will be drawn.This should take less than a minute.

 

How often do I need to do the test?

 

You need to do the test only once in your lifetime. Your status with respect to Thalssaemia will never change.

 
When should I do the test?


You can do the test at any age. Before marriage is advisable. But it is critical before planning a child.Make sure both of you are Thalassemia free before you decide upon selecting the life partner.

If you come to know at the time of (during) pregnancy that both of you (you & your life partner) are Thalassemia Carriers, take guidance of your Gynanaecologist and get the prenatal test done to know whether foetus is affected (Thalaasemia Major) or not. .


Where can I do the test?

 

Test for Thalassemia can be done at any good pathology laboratory. How ever the best method is by using the Bio Rad Variant Madrine (HPLL Technology). Which is available with some Laboratories.

 
What is Thalassaemia Major?
   
Thalasemia Major is a genetic blood disorder, which affects more than 1 Lakh children in our country. Children suffering from this disorder cannot produce hemoglobin, which carries oxygen to various parts of the body. Children born with this disorder will survive only if given regular blood transfusions. These transfusions need to be taken every 15 days throughout their lives.
Repeated blood transfusions result in an undesirable buildup of iron in the body. This can be fatal. The child has to take an injection every day to dispose of this excess iron. This injection is given by a special infusion pump over a period of 8 to 10 hours every single day. In most cases, the pump is switched on before the child goes to sleep and is switched on before the child goes to sleep and is detached the next morning. An oral drug has been developed for iron disposal which can be replace the injection. This drug is relatively affordable but does not work with all children.Child who is affected Thalassemia_Major has Acute Anemia, Enlarged Liver & Spleen. Deformed bones and many other disorders.