Thalassemia is an inherited blood disorder caused by genetic mutations that prevent the body from producing enough haemoglobin, the protein in red blood cells that carries oxygen. This deficiency leads to decreased red blood cells and, consequently, anemia. It is a lifelong condition requiring treatment, such as blood transfusions, in moderate-to-severe cases.
Across the world, many people discover thalassemia only during pregnancy or early childhood, when earlier screening and timely care can make a profound difference. At the same time, many individuals who are already diagnosed continue to live without the visibility, recognition, and support they need and deserve.
Roughly 6,000 to 8,000 children are born with thalassemia every year, with around 11.4% to 12% of the population being the carriers, according to the Bangladesh Thalassemia Foundation. Over 60,000 people are currently living with the disease, with Rangpur division having the highest carrier frequency at 27.1%. Due to the high carrier rate, Bangladesh is considered part of the ‘thalassemia belt,’ a region where the genetic disorder is highly prevalent. Recent studies indicate that thalassemia is a significant burden on the healthcare system, with thousands of new cases added annually.
To raise global awareness, the World Thalassemia Day is celebrated annually on May 8th. The day honours patients, promotes prevention, advocates for better care and access to treatment. The 2026 global theme: “Hidden No More: Finding the Undiagnosed. Supporting the Unseen.” The day serves to bridge the gaps in knowledge and treatment access worldwide.
Before being diagnosed with thalassemia, Nilima Begum said that she had a long-time fever, physical weakness, poor appetite, pale skin, yellowish mucous membranes, and a hemoglobin level below 5g/dL. After several medical tests and dissatisfactory reports, her father took her to the DMCH. In August last year, a blood test confirmed her as a thalassemia patient. She takes chemotherapy once every twenty days, and requires thousands of takas for long-term treatment. She feels physically weak for 10-15 days and requires 10-12 pounds of O+ blood.
Dr. Tahera Banu of DMCH said that thalassemia is prevented primarily by identifying carriers through genetic screening (blood tests) before marriage or pregnancy, followed by genetic counselling for at-risk couples. If both partners are carriers, prenatal diagnosis (CVS or amniocentesis) or pre-implantation genetic diagnosis (PGD) can determine if the foetus has the severe disease, allowing for informed reproductive options.
The global thalassemia community calls for stronger awareness, earlier detection, and greater support for every person affected by the disease. Thalassemia is more common in people with ancestral links to regions of the world with malaria, such as Africa, Southern Europe, and parts of Asia. This is because the genes that cause thalassemia arose in humans to help protect against malaria.
With proper care, many patients can avoid regular transfusions. However, clinical management remains inadequate due to insufficient healthcare infrastructure, poor access to safe blood transfusions, limited iron chelation therapy, and a lack of multidisciplinary care.
Government support is essential for poor patients to get the opportunity of better treatment to live a life with hope and optimism. Private organisations, funds from corporate social responsibilities (CSR), financial institutions, banks, NGOs, and Civil Society Organisations (CSOs) should come forward to contribute to the welfare of thalassemia patients. Moreover, advocacy, resilience and adaptability are greatly important.
The writer is an award-winning health, climate change, environment journalist, columnist and researcher.
