Discussion Forums > General Chatter
Thalassemia in India
Bostonian_04:
Hi Shikha,
I was reading your post where you make the statement that electrophoresis should be made MANDATORY for all pregnant women in India. My question is, why only the mother, it should be both the mother and the father as I believe that he should also be aware of his condition. Also, I know that people do go in for blood tests, and if they have depressed MCV and Hb, they should also get tested for thal. This should be done by the doctors. My belief is that government in itself cannot get the awarenessss for thal, it should also be the doctors who deal with the people person-to-person and as suggested in the discussions here, by some of the well known celebrities.
I do agree that getting tested during pregnancy will certainly help the silent carrier to know that she is a thal carrier. However, my concern with this approach is that a would-be mother who did not know earlier about her status may be depressed to such a degree that it might affect the innocent little baby as the well-being of that innocent little bundle of joy is tied integrally with the well-being and mental health of the mother (as well as the father and others who are in the immediate environment of the mother and can impact mother's mental frame of mind - maybe I am hypothesizing, but that's what I think).
Maybe I am playing devil's advocate, but I think your suggestion regarding a detailed blood that tests for thalassemia be made mandatory for issuance of a marriage license may have some holes in it. In case of India (or maybe for that matter the other south-east asian countries, like Pakistan, Sri Lanka, Bangladesh, Maldives, etc) think of the vast multitude of population that live in the villages who get married off and their marriage is not even registered, so there is no question of a license to be issued and thus no need for a blood report.
I think a better option would be get every new born tested asfor thalassemia a part of the vaccination program, which I know no parent ignores in any part of this world. This will ensure that the family as well as the patient is aware of the condition if he/she has it and necessary precautions taken during their development into adulthood and then subsequently, during marriage. And, since the blood report would be available as a part of the vaccination regimen, the parents can match the blood reports (as they do match blood reports for HIV nowadays - beleive it or not I read it in one of the bengali panjikas (almanac)) when they are busy matching horoscopes (sorry, I could not let that pass :)).
Any thoughts on this ....
Bostonian
Andy Battaglia:
HI,
I agree completely with this...
--- Quote ---I think a better option would be get every new born tested as for thalassemia
--- End quote ---
I think this needs to be done worldwide. With literally hundreds of millions of carriers of the thal trait in the world, it makes sense to test every newborn for the trait so they have this information available for their life planning. It would also serve to educate the public about the danger involved when two carriers have children. This is a task to be appoached anywhere from your local hospital and local government to the UN and WHO,
From the local to the national to the international level this effort needs to be made. Let's end the surprise of thal major births in our lifetimes. Let's employ every avenue to both encourage testing and to publicize thalassemia.
KHALIFA:
HI ALL
Andy how many time i have to say we must have an army for fighting against the PpL who just want to colect money and live all the world go to the hell ((am sorry but am realy angry :mad)) it's not only in these area which you said it's all the world even in USA .
so my plan is prebare all thalassimic with spicial treaning :letsgo :bat and go to UN and hold all the deplomatic on one corner so even they lestning to us or give them some hard time :evilplan
khalifa
Shikha Mitra:
Hi Bostonian
I was talking about the indian situation, where hardly anyone will go for a blood test unless and until absolutly needed.
So since in India, all pregnant women do go for a blood test at least ONCE during their pregnancies, then that is the best time to get them tested, or esle make ELCTROPHORESIS compulsory in India along with a registration cerificate for marriage. India, 90% of the marriages are not registered, because we have these socail ceremonies.
Then again, Blood is not tested but horoscopes matched, which is ridiculous.. so how does one spread an awareness, unless by law?
And only the Govt. can do that ina counbtry like ours, where we have a huge population, ruled by different customs and basic education is still a long way off.
So we do need to make a law and make registration of marriages compulsory along with a blood analysis of the couple.
And I am sure this will be a far somple process.
We do have a hearing coming up for the gay rights in the supreme court soon!! It depends how loud your voice is!!!
shikha
Narendra:
When I visited India in Feb 2006, some NGO's mentioned they did testing in schools(Pre-K's are better) prior to admission of the kid (This obviously can be late - but atleast they can detect a minor) and if they find a carrier, provide genetic counselling to the family with a red flag if they plan for another baby
-Narendra
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