For thalassemics, life is a constant struggle

Seventeen-year-old Nirmal (name changed) from Coimbatore is extremely energetic. He can’t stop smiling at people, when he distributes chocolates. He says, “I have completed school and I am going to pursue my B.Com.” Like Nirmal, there are several other children with thalassemia, a blood disorder, from the state. For many children like Nirmal, the Rotary Central TTK VHS Blood Bank at VHS Hospital Complex, is a second home as they visit it at varying intervals for blood transfusions, and regular checkup. 

Thalassemia is an inherited blood disorder in which the body makes an abnormal form of haemoglobin. Haemoglobin is the protein molecule in red blood cells that carries oxygen. At birth, the baby with thalassemia major seems entirely normal. This is because the predominant haemoglobin at birth is still foetal haemoglobin. After the first few months, the baby becomes a lot paler, develops infection, has poor appetite and bouts of fever.

Dr Revathi Raj, paediatric-haematologist from Apollo Speciality Hospital, who follows up on the cases, says that the blood disorder is highly prevalent in hilly regions and linked to consanguinity. “Among tribal population and hilly areas the marriages are usually consanguineous. The chances of 

both parents being thalassemia carriers is high in such cases. But the positive side is it can be detected at primary health care centres and among obstetricians, they need to be educated about it,” he says.

Catering to patients mainly from Dharmapuri, the centre has a number of patients who come from hill regions like Coonoor, Salem and the Ramnad belt. In some parts of Dharmapuri, it is as high as 22 per cent, while across the state it is at 0.6 per cent (carrier stage). 

Due to frequent transfusions, the iron levels in the body are high. Therefore, an endocrinologist has to monitor the progress. Dr Jayashree Gopal, endocrinologist-diabetologist, says, “Growth failure are common among these children. Diabetes mellitus may also develop in patients with iron overload. It is important to therefore monitor their hormonal levels.” 

Dr Revathi says, however, the good news is that iron levels can be managed with medicines and injections. “Earlier, they used to develop heart and liver complications. But now, this can be managed from when they are 15-18 months through medicines.” 

At the centre, blood transfusion is free of cost. In commercial set-ups it could cost anywhere between Rs. 3,000 and Rs. 3,500. These children have to be on transfusions all their life, while bone marrow transplant can cure them, provided it is done early. “The success levels are 90 per cent as 30 per cent of them are able to find donors from their families. We have registries like DATRI facilitating the search for a potential donor. The Chief Minister Health Insurance Scheme covers the transplant and has helped a few children,” adds Dr Revathi.

However, for mothers like Amala (name changed), who hails from Salem, a government move to make tests compulsory before marriage could help them avoid a life of psychological stress and emotional distress. “I wish someone told us to do go for a check-up before marriage. If government steps in, many will adhere to it,” she adds, hinting that in smaller towns, thalassemia is looked at as a huge burden.