New Delhi Oct 22, 2024: “The child is Thalassemia Major,” pronounced the hematologist. We didn’t know what to say, because, we didn’t know what it meant and what were its implications. It took several counselling sessions, second opinions and consultations to understand the gravity of the situation. This is more or less the situation that every parent of a thalassemic child goes through initially. They all pass through the three stages of emotions, from shock to anger to resigning to fate.
The similarities end there. There are those, who understood the pain and the trauma that the entire family of a thalassemia major goes through and they decided to spread awareness about this genetic blood disorder and not just arrest the spread of it, but to completely eradicate it from the face of earth. Thalassemia & Sickle Cell Society (TSCS), Hyderabad was established by few such individuals over twenty six years ago. Today, it is a pioneer and a trailblazer globally, in its crusade against this genetic blood disorder and similar organizations the world over are keenly watching the activities and emulating them.
Every board member of TSCS, Hyderabad INDIA, is playing a key role in making this organization the largest society in the world, offering all services under one roof and that too free of cost. Dr. Chandrakant Agarwal, the President of the society has been in the driver’s seat for over a decade now and has been singularly responsible for this enormous transformation that has hurtled TSCS, Hyderabad on the global orbit. His positivity,Thala exuberance and zeal to make our country a ‘THALASSEMIA MUKT BHARAT’, percolates down to the last member of his team. Today, it is a globally recognized group and members of similar organisations from across the world, visit the society to see and learn the nuances of running an organization of such a magnitude.
The challenges are manifold. This genetic blood disorder is prevalent across the demography, hence it is all the more challenging. Screening is the only solution and it is SIMPLE, SURE AND EASY. All that the couple have to do is get a simple HbA2 test done during the first trimester of pregnancy to rule out the possibility of the foetus being a thalassemia major. That would be, as the saying goes, nipping it in the bud.
The government machinery plays a vital role in eradicating thalassemia from the country and it is not possible to achieve it without their active involvement. Dr. Chandrakant Agarwal and his team understand this and they regularly travel across the length and breadth of the state of Telangana, meeting the officials at the district level, inspiring them to mobilise their forces to fight this disorder through their very strong and efficient network of Primary Health Centres (PHCs). The response has been very encouraging and the results are showing. It was a red letter day, when Mahabubnagar district, in the state of Telangana ,which falls under our precincts became the first district in the country to have achieved ‘A HUNDRED PERCENT PRE-NATAL SCREENING DONE,’ for Thalassemia. The district officials of Adilabad and Khammam have initiated the campaign against thalassemia on a war footing.
The nearly three decades of journey has not been easy. There were challenges to be faced, hurdles to be crossed. The trauma of the affected families become manifold, when the societal ignorance aggravates the situation. TSCS has to meet many challenges…Regular blood supply, periodic and high-level monitoring and testing; unhindered supply of chelating drugs, counselling by professionals, motivation, paving a path for them to lead a normal life, pursuing a regular career like a normal person are the services that the society has been undertaking, day after day, for these three decades, relentlessly. The fact that, today the society can proudly claim to have a few doctors, a civil servant, an architect and other professionals is a vindication of our claim. The strength of the society has always been its collective confidence that ‘anything can be achieved, if your mind is set on it.’ The people around us silently observe and, if they feel the intent is noble, they come forward to help. That is how this huge and exclusive premises of TSCS, Hyderabad was built, where over 70-75 patients come for blood transfusions every day. It just proves the point that perseverance and persistence pays. If we are determined, then Thalassemia will vanish from the face of INDIA and to achieve that we need a collective will and a mandate to make HbA2 test mandatory for every pregnant woman in the first trimester of her pregnancy.
