Living with thalassemia major, he now plays saviour, says early screening can prevent the disorder in newborns

Nobody knew much about thalassemia when I was born in 1980, says Sejpal (Express photograph by Arul Horizon)

“Nobody knew much about thalassemia when I was born in 1980. Certainly, my parents didn’t know they were carriers,” says Jatin for whom life, as he remembers as a child, was about blood transfusion every fortnight followed by iron chelation injections to rid the body of excess iron. It was at KEM Hospital that noted paediatrician Dr Anand Pandit diagnosed his condition when he turned two. Looking back, Jatin is grateful that he did not pick up any infection following his many blood transfusions but admits that arranging blood was a challenge for his parents. Each transfusion meant almost two days of rashes, fever and weakness. As a child, he required a 250 ml pouch of blood which then increased to 400 ml as he grew older. “The injections to remove excess iron were costly, each vial costing Rs 160 back then. Two vials had to be administered via an infusion pump though my father could not afford the Desferal injection. I took shots at least twice a week or so. The infusion pump helps deliver a specific and continuous amount of the medicine subcutaneously. The infusion set has to be inserted under the skin and connected to the pump and has to be given over 8-12 hours,” says Jatin.

He prefers to blur out his school and college memories as he was an outcast, without friends and left out of sports, drama competitions, picnics and excursions. “Remember I was growing up through the 80s and 90s, so the medical community was focussed on other diseases like HIV,” says Jatin, who had to face a great deal of stigma. “The social isolation hurt me more than my physical pain,” says Jatin, who took to watching television and reading, determined to equip himself with every bit of research on his condition and harness it for bettering his predicament. As he grew up, the painful injections were replaced by Kelfer capsules thrice a day to deal with his iron overload. Still, his counts outpaced him because of frequent transfusions in his early 20s when he had back-to-back surgeries. First, it was the spleen and within a month, it was his gallbladder. Then a leg fracture following a road accident. He recovered slowly as he was swamped by lethargy that left him incapable of finishing basic tasks and feeling frustrated. By 28, he developed Type 2 diabetes and an eye clot. So now even the slightest increase in iron can harm his pancreas that much quicker.

“Thalassemia Major is a big health issue even today although it is totally preventable. It is a draining cost as monthly medical expenses are easily about Rs 10,000 to Rs 15,000. Jatin’s parents were Thalassemia Minors (also known as carriers) and a simple blood test called HBA2 is enough to identify the trait. The Maharashtra government is planning to fix a rate for this test. There are tests to detect if the child has Thalassemia Major during early /pregnancy. Fetal medicine specialists take a sample from the placenta and accordingly couples are guided during their pregnancy. We are aiming for zero thalassemia births by 2025,” says Dr Munshi.

Thalassemia Major is a big health issue even today although it is totally preventable (Express photograph by Arul Horizon)

Jatin has forged through his adversities. Today he volunteers at the Thalassemia Society of Pune, where he met his wife Megha, also a thalassemic. He organises blood donation, awareness and screening drives and emerged a saviour during the pandemic, getting blood donors and arranging transfusion for himself and others despite the lockdown. So committed is Jatin to helping thalassemic patients that he devours medical literature and tells them how to manage their condition with examples from his own life. And for all the good work he does, there’s no end to the bad days. Having normalised transfusion and iron tests as his body basics, he was happy the day his daily dose of medicines came down to taking 12 tablets. But now he has to battle osteoporosis and weak veins. Yet he has no option but to be indefatigable. “There was a time when people mistook my transfusions to be dialysis sessions and thought I had kidney disease. There are still so many myths floating around. Thalassemia is 100 percent preventable by pre-marital screening or early pregnancy screening followed by marriage counselling and antenatal diagnosis. Thalassemia Majors can live normal life if they are given adequate blood transfusion and iron chelation therapy. Look at me. Thalassemia can be cured by bone marrow transplantation but requires matched siblings. There is no evidence that thalassemia trait makes carriers more susceptible to COVID-19,” says the patient who could have been a doctor.