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Dr. Rasmi Palassey, Consultant – Pediatric Oncology, Ramaiah Institute of Oncosciences, Ramaiah Memorial Hospital
Understanding the Burden: A Silent Inherited Crisis
Thalassemia is among the most common inherited blood disorders globally, with India bearing a significant portion of the burden. Over 100,000 children in the country live with beta thalassemia major, and each year, approximately 10,000–12,000 babies are born with the condition. Beta thalassemia is passed from parents to children through genes. A child develops the disease only when both parents are carriers of the faulty hemoglobin gene. Most carriers are healthy and unaware of their status, which makes carrier screening so important. Screening prospective parents—ideally before conception, or at least early in pregnancy—can identify at-risk couples, enabling genetic counseling and prenatal options that can prevent transmission of the disease to future generations. Yet, awareness of these preventive measures remains low in many regions, making beta thalassemia not just a medical challenge, but a public health issue requiring urgent attention.
A Curative Advance: Bone Marrow Transplantation
For decades, children with thalassemia major have survived on regular blood transfusions and iron-chelating medication. While lifesaving, this approach is lifelong and carries risks such as iron overload, affecting the liver, heart, and growth. Today, bone marrow transplantation (BMT)—also called hematopoietic stem cell transplantation (HSCT)—offers the only curative treatment. The procedure replaces the patient’s faulty bone marrow with healthy stem cells from a donor, allowing the body to make normal red blood cells. Even in the absence of a fully matched sibling, haploidentical transplants from half-matched family members (such as a parent) have shown excellent results, thanks to recent advances in transplantation protocols.
Stories of Resilience and Cure
One child diagnosed with beta thalassemia major at just four months of age received regular care and transfusions at our hospital. During the COVID-19 lockdown, while in his hometown, he acquired hepatitis C due to sub-standard transfusion facilities. After successful treatment of the infection at our center, he underwent a bone marrow transplant, made possible through funds raised by well-wishers connected to the family. Today, he is healthy, attending school, and completely free from the need for transfusions. Another transformative story is that of an 11-year-old boy who underwent a haploidentical transplant under the Ayushman Bharat – Arogya Karnataka (SAST) scheme. This was the first thalassemia transplant at our center under the scheme, provided completely free of cost to the family. The child, once burdened by repeated transfusions and iron overload, is now cured of thalassemia and leading a full, healthy life.
Challenges: Access, Affordability, and Awareness
Despite these success stories, many children in India still lack access to curative treatment. Bone marrow transplantation remains concentrated in a few specialized centers, and while government funding schemes have improved affordability, awareness and navigation of these schemes remain a hurdle for many families. Equally critical is the need to mainstream preventive care. Nationwide carrier screening, especially in high-prevalence communities, and genetic counseling programs must become part of standard reproductive health services. Thalassemia is preventable—no child should have to live with the disease simply due to lack of awareness.
A Call for Collective Action
Thalassemia is unique in that both prevention and cure are within reach. With robust investment in public awareness, early screening, equitable access to transplantation, and policy support, India can lead the way in reducing the burden of this inherited disease. At our center, we remain committed to ensuring that no child with thalassemia is denied the chance of a cure. On this International Thalassemia Day, let us move closer to a future where thalassemia is not only treatable—but rare.
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