A silent burden: Thalassaemia patients in Karnataka battle disease with hope and hardship Premium

Thalassaemia patients in Karnataka face hope and hardship, battling disease with silent strength and financial struggles.

Her day begins with a quiet prayer and a glance at the faded calendar, marked with yet another hospital appointment. For over two decades, Gowramma’s life has revolved around needles, blood bags, prescriptions, and silent strength.

Gowramma is the mother of two grown-up children — Tarun and Santosh — both living with thalassaemia, an inherited blood disorder characterised by reduced haemoglobin production.

Every few weeks, the children need blood, life-saving transfusions that keep them alive, but slowly poison their bodies with iron. The medicine to fight this iron overload is expensive, and the bills never stop. The family has a small garment shop at Peenya, an industrial area in the northern part of Bengaluru, and is struggling to meet an avalanche of medical expenses. Gowramma has not been able to get the free medicines from the government-run Victoria Hospital for the last four months.

At Sunkadakatte, a semi-urban locality in west Bengaluru, life is a daily struggle for 19-year-old Mubeena Ruqsar, who lives with her parents. She was diagnosed with beta-thalassaemia major at just six months. Since then, blood transfusions every three weeks, countless needles, and a growing pile of medical records have all been part of her routine.

Her father, Rahmathulla, works as a mechanic in a local garage. Her mother, Sakina Banu, once dreamed of becoming a teacher but now dedicates every waking hour to managing Ruqsar’s health — tracking her transfusion schedules and watching for signs of fatigue, fever, or distress. They live in a rented two-room house, and save every extra rupee for hospital visits and medicine. The young adult’s treatment involves not just transfusions but also expensive iron chelation therapy.

These three are among an estimated 10,000 thalassaemia patients in Karnataka, a number that experts say is growing due to the lack of systematic screening and awareness. No government registry is available to document the number of people living with this disorder.

However, despite the growing burden, public health mechanisms remain fragmented. The State established the Karnataka State Blood Cell for the treatment of patients with blood disorders (haemophilia, thalassaemia, and sickle cell anaemia) in 2017. While this Blood Cell — operating under the National Health Mission (NHM) — is coordinating treatment and providing free transfusions in government hospitals, access to quality iron chelation drugs and specialised care remains uneven.