Hyderabad Thalassemia Society: Making every drop of blood count for 25 years

10:00 AM Jan 30, 2023 | Bhavana

Hyderabad: With 3,500 registered patients suffering from Thalassemia, and with a lot of challenges daily, the members of the Thalassemia and Sickle Cell Society of Hyderabad have been working hard to save the lives of the patients, especially children.

Established 25 years ago, the society works 24x7 to ensure constant supply of blood. In an exclusive chat with NewsMeter, Chandrakanth, the president of the Thalassemia and Sickle Cell Society, talks about how hard it is to procure blood for patients, the challenges they face, and how they work around the clock to make sure every child is safe.

Thanks for joining us today. As someone who has been running the society for 25 years now, can you tell us about the current scenario of Thalassemia? Can you tell us a little about the society’s daily routine?

Chandrakanth: Our day starts with the number of things we need to follow up on. New patients call for registration. There will be a few cases of blood transfusion and we need to make sure arrangements for those are in place. This is the most challenging part of the day because we need to procure blood for the transfusion. Many children and adults suffering from the disease will be waiting for their turn. Our day doesn’t end well either as the challenges for the next day are ready for us to face, but we are prepared for it.

The 3,500 patients who are registered and those who come to get enrolled, where are they from? Are they aware of what is coming?

Chandrakanth: Right now, we operate in Hyderabad, Khammam, and Kurnool. That is for the patients who are registered with us. But to seek help, people from across the country come. Let me tell you that it is high time we all do a little bit in spreading awareness about the disease.

Thalassemia is a genetic disorder caused by errors in the genes for hemoglobin. People suffering from it need blood once in 15 days and they need to undergo a blood transfusion. This means they need to keep looking for donors every 15 days. Patients and their parents need counselling. And we do that as well for them.

Going by the number of registered patients, there is a huge need for blood. How do you manage to procure the blood?

Chandrakanth: That sounds like a big challenge, doesn’t it? We organise blood donation camps. We own a blood bank where we store the blood. We need to procure so much blood that needs to fulfil the need of patients who are ready and due for the transfusions. Sometimes, the family members come forward to donate blood. But mostly, it is through donation camps and other blood banks. Some people know how intense and dreadful this disease is and they come forward to donate blood voluntarily. No drop of blood is wasted once it reaches us.

Do you make sure the blood is safe and pure and that it is free from any other disease?

Chandrakanth: We would never take such a risk. We have state-of-the-art machinery and a team of doctors. Only after doing the necessary tests is the blood sent for transfusion. We own a 2500 sqft place in Aramghar. That is where the blood bank is located.

Do you get any help from the state and Central governments? Have you approached any other organisations for help?

Chandrakanth: Of course. We get a lot of help from the Government of Telangana. Many thanks to them. We are part of the Arogya Sree funding as well. Also, we receive funding for the CSR activities of a few companies. But we need help from the Central government as well because we want to help kids across the nation. That is a big plan and needs the government’s help on a big scale.

What about the support the society gives to the patients?

Chandrakanth: When parents come to us seeking help, we counsel them first. We first tell them to accept. We spread awareness among them. We help patients undergo surgeries free of cost. We help them through all the processes and funding. We recently helped a child undergo bone marrow transplantation. We believe that post-surgery is also as important as surgery. So, we take care of the patient for two years after the surgery. We do everything possible to make sure the patients are safe.

Can you tell us about the challenges you face? I am sure there are many.

Chandrakanth: I will tell you about the ones we keep facing regularly. When mothers of kids suffering from Thalassemia get pregnant for the second time, we ask them to get tested. We can know if the new baby will also have Thalassemia. If the test results are positive, we ask the mothers to abort the child which they don’t do. This is a genetic disease. These mothers and their families do not understand the intensity of the disease and the child has to suffer from birth. There are a few mothers who have understood the risk and gone for an abortion. That is why we keep stressing that it is important to spread awareness about Thalassemia and Sickle Cell.