Mother of a thalassaemic-major daughter (who died at the age of 30), Dr Jalbala Sardana, spoke about the challenges faced by those affected with thalassaemia in UP and the support needed from the government. She stressed upon the need for having a registry of such patients in UP. The present count of thalassaemia patients in UP is only 2500. But this could be far below the actual number (which could be as high as 1000 new cases every year) as no registry has been done to date.
"There is an urgent need for prevention programmes as well as safe blood transfusion, free chelation and lab-testing facilities. There are very few facilities available in UP for getting the carrier parents tested. So samples have to be sent elsewhere and many cannot afford it. Lack of testing often results in the tragic situation of having a second thalassaemic major child in the same family. In Bareilly itself I know of 5 families with 2 thalassaemic children each. Parents of a thalassaemic-major child must be encouraged to go for perinatal checkup in case of a 2nd pregnancy, and find out if the unborn child is thalassaemic major or not. If it is, then one should advise for medical termination of pregnancy," said Dr Sardana, who is also the Secretary of Thalassemia Children Welfare Society.
Patients speak:
A young woman (who looked more like a girl, perhaps due to improper monitoring of her condition in childhood) bemoaned, "When I go to Sanjay Gandhi Post-Graduate Institute of Medical Sciences (SGPGIMS), Lucknow, for blood transfusion, my main concern is whether I will get a bed or not. Very often there are 3 patients to a bed and sometimes we have to return as there is no bed available--even though blood is available and so are the doctors. If more thalassaemia care centres are built, it will solve this problem."
A young boy wished that the much-delayed PWD (people with disability) Bill is passed by the Parliament so that thalassaemia is officially recognized as a disability. "It will at least make us avail of the facilities which other disabled persons enjoy. Even though our disability is not visible externally we face far greater problems than other handicapped people. We also have a right to be happy, but life becomes very frustrating at times," he said.
One out of every 8 to 10 persons in India is a victim of thalassaemia. 50 million Indians carry the thalassaemia trait and one thalassaemic child is born every hour in India. Over 85% of thalassaemic children die for want of proper diagnosis and/or care. Therefore, not only ignorance about thalassaemia in society should be removed, but the government also needs to play a more proactive role to control this preventable disease.
Shobha Shukla, CNS
(The author is the Managing Editor of CNS. Email: shobha|AT|citizen-news.orgEmail address, website: www.citizen-news.org)
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