From Rotaract Club Of Mumbai Ghatkopar - RCMG

ROTARACT CLUB OF MUMBAI GHATKOPAR

YOUTH WING OF ROTARY CLUB OF MUMBAI GHATKOPAR R.I.D 3140

40 million INDIANS are THALASSAEMIA MINOR

YOU could be one of them

Click here to register for conducting Thalassemia Minor Checkup Camp - Call Rtr. Parag Shah (+91 9987045770)

• You could be Thalassemia minor even if you are healthy, there are 40 million INDIANS who are Thalassemia Minor.
• Almost all these Thalassemia Minors are healthy, like you and me, Doing a Thalassemia minor test could be the most important decisions of your life.
• The sindhis, Punjabis, Gujrathis (Lohanas, Kutchis), Agris, Mahars, Bengalis and some Muslim communities are high risk communities.
• A Thalassemia Minor is also called a ‘carrier’ of Thalassemia.

F.A.Q ’s

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

Absolutely Yes! You could be a Thalassemia Minor (also called ‘carrier’ of Thalassemia).

Now, what is it?

You know, you must find out whether you are Thalassemia Minor.

Why?

Because if you are a Thalassemia minor, and your spouse/ spouse to be is also one , then your future child could be in for serious trouble.

How?

Your child could be THALASSEMIA 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, Thalassemia minors are healthy. They pose no risk to themselves. But if both partners in a marriage are Thalassemia minor, there is a 25 % chance, during each pregnancy, that their child will be a THALASSEMIA MAJOR.

So what should I do?

You must do a blood test and find out if you are a Thalassemia minor.

And then?

If you are not a Thalassemia minor, you don’t need to do anything.

And if I am a Thalassemia minor?

If you are a Thalassemia minor, you must check whether your spouse is also a Thalassemia minor.

And if my spouse is not a Thalassemia minor?

You don’t need to worry at all.

And what if both of us are Thalassemia minor?

You must realize that there is a 25 % chance that your child will be a Thalassemia major.

Does that mean that we cannot have a child if we are both Thalassemia minor?

That surely is the safest options. 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 gynaecologist that you and your spouse are both Thalassemia minor. You must insist with the doctor for a Prenatal test on the foetus. The Prenatal test will tell you if the foetus is affected (Thalassemia major) or non-affected (Minor or Normal). And if the foetus is affected you can choose to terminate the pregnancy.

But how come noboby knows about this?

It is sad that nobody knows about this. And they come to know that they are Thalassemia minor only after they have given birth to a Thalassemia major child. By which time it is too late and their life is shattered.

My god!! Then everybody must check himself /herself for Thalassemia minor?

You bet!! There are more than 40 million Indians who are Thalassemia minor. 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 Thalassemia minor?

You need to do a specific Blood test for Thalassemia minor. This is a simple blood test.

How much time will it take to do the test?

Only 2 ml 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 report will be made available within two weeks.

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 Thalassemia will never change in your lifetime.

When should I do the test?

You can do the test at any age. By the time you get married you should know if you are a Thalassemia minor. But, definitely before planning a child, you ought to know if you are one.

Where can I do the test?

Tests for Thalassemia minor, using the HPLC (Bio-Rad Variant) machine, could be done at :

• Dr. Amin’s Pathology Laboratory, Nariman point. Tel no. : 2288 4252/62, 2288 4547, 2282 2471
• ICMR, K.E.M hospital, Tel no. :2413 8518
• Reliance Life Sciences Ltd., Vashi. Tel no. : 3911 8064
• Speciality Ranbaxy Ltd. Andheri (East).Tel no. : 3081 1111, 3081 1199
• We Care Trust, Andheri (West). Tel no. :2623 1520, 2637 3891
• Dr. Jariwala Laboratories, Borivili (West). Tel no. :2801 1483, 2809 0762
• Dr. M.B. Agarwal Hematology Centre, Dadar. Tel no.2414 2272, 2414 4453
• Bhide Laboratories, Thakurdwar. Tel no. : 2382 0740
• Metropolis Health Service P. Ltd., Worli. Tel no. : 6662 4040
• M. G. M Hospital, Vashi. Tel no. : 2782 2203
• Thalassemia Foundation, Ulhasnagar. Tel no. : (95251) 255 4171, 254 2860

What is Thalassemia Major?

Thalassemia 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 the excess iron. This injection is given by a special infusion pump, over a period of 8 to 10 hrs, everyday. 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.

The situation in mumbai?

There are more than 1000 Thalassemia Major children, receiving blood transfusions at various Day Care Centres 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 dates for the next transfusion. This helps in minimizing the absence from school etc. The Day Care Centres monitor the child on every aspect of the treatment.

It is important that these Day Care Centres, where the child has 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 Centre 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 Thalassemia. The Government has :

• Ensured that all children suffering from Thalassemia Major receive blood free of cost. For this purpose the Government has :-

1. Issued identity cards to all children.
2. Identified and instructed Blood Banks which will provide blood.

• Constituted Thalassemia Committees in all district places with objective of providing comprehensive treatment.
• Formed Thalassemia Clinics.
• The Government is also supporting NGOs, which are working in the field of Thalassemia and assisting them in creating awareness about Thalassemia Minor.

How can I help the cause of Thalassemia?

For prevention :

• Get yourself tested for Thalassemia Minor.

For care of Thalassemia Major children :

• Donate blood regularly.
• Provide financial support for iron tablets/ injections.
• Provide financial support for notebooks/ uniforms.
• Organise entertainment outings for Thalassemia Major children.
• Provide air conditioners, music systems, reclining chairs, story books, indoor games etc. for Day Care Centres.

Courtesy:-Th!nk Foundation