Every year, India sees around 10,000-15,000 babies being born with thalassemia major. And experts blame a lack of awareness and delayed testing.

A child born with thalassemia major is relegated to a lifetime of blood transfusions, which take an emotional, psychological, and economic toll on the family. Hyderabad’s Chandrakant Agarwal (74), a PhD scholar, who is currently serving as the president of the Thalassemia and Sickle Cell Society (TSCS) of Hyderabad — a role he has essayed for the last 13 years — experienced this firsthand, as he accompanied his granddaughter Nitya to hospitals across the country for her blood transfusions.

Having a front-row seat to the struggle compelled him to dedicate his life to coaxing India into relentless screening, which, he believes, can help in early detection and possible prevention of thalassemia.

“When Nitya was born, she was healthy. But at eight months, her skin started turning yellow, and we presumed it was jaundice,” Agarwal explains. Every treatment failed. One day, one of her doctors, observing the steadily dipping haemoglobin levels, advised a blood transfusion. “Within minutes of the transfusion, Nitya was fine! It was almost like a miracle,” Agarwal recalls the family’s astonishment.

Today, at 26, Nitya has routine blood transfusions every fortnight and chelation therapy to manage iron overload.

While her story makes a compelling case for how an efficient treatment modality lets a thalassemia major patient live life to its fullest, her grandfather believes there is no good reason any child should have to deal with something that can easily be prevented.

Understanding thalassemia

The blood disorder is inherited; it is passed down through genes and is characterised by faulty haemoglobin synthesis. This impairs the oxygen-carrying abilities of red blood cells, leading to fatigue.

Dr Suman Jain, a paediatrician, chief medical research officer and secretary, TSCS, cites one of the most common symptoms as irritability.........

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