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A routine evening took a serious turn for a young couple in their 20s when their three-month-old baby was noticed to have mild abdominal distension and persistent crying—initially assumed to be a case of infantile colic. However, upon further evaluation, the child was diagnosed with Thalassemia Major, a severe inherited blood disorder that requires lifelong monthly blood transfusions to sustain life.
The family was informed that although the time commitment involved in transfusions may seem limited—approximately four hours once a month—the implications of the disease are far-reaching. Terms such as genetic disorder, lifelong transfusions, and iron chelation therapy were introduced, leaving the parents overwhelmed. When the father inquired about a permanent solution, bone marrow transplantation was presented as the only potential cure—albeit one associated with complex procedures, significant costs, and a prolonged recovery timeline.
World Thalassemia Day, observed annually on May 8, is marked to raise awareness about this chronic hematological condition and to express solidarity with patients and families affected by it. In Thalassemia Major, the production of healthy hemoglobin is impaired, resulting in severe anemia. Without regular treatment, life-threatening complications are inevitable. Thousands of children in India are diagnosed with this condition each year, making early detection and consistent management essential.
It is often asked by parents whether any action of theirs contributed to the diagnosis. It must be emphasized that no fault lies with the parents, as Thalassemia is a genetic disorder inherited through carrier status from both parents. Unfortunately, due to low awareness and insufficient screening, the diagnosis is frequently made only after symptoms develop.
In such cases, pediatric hematologists play a critical role. Comprehensive counselling is provided, followed by the formulation of a tailored treatment plan based on clinical guidelines. While blood transfusion forms the cornerstone of initial management, the introduction of iron chelation therapy is vital to prevent secondary complications such as cardiac failure, liver dysfunction, and delayed growth. The long-term objective remains to facilitate a healthy transition into adolescence and adulthood.
It must be stressed that, with optimal management, children with Thalassemia can experience a normal and fulfilling childhood. Regular monitoring, adherence to medical protocols, and a supportive environment are essential components of this process.
This year’s theme, “Uniting Communities,” serves as a reminder that comprehensive care must extend beyond hospitals. The role of communities, support groups, educational institutions, and policymakers is critical in ensuring that patients have access to safe and affordable transfusions, psychosocial support, and inclusive opportunities. Awareness and early screening, particularly premarital and antenatal, should be promoted as essential public health measures to prevent the birth of affected children.
On this World Thalassemia Day, a renewed call is being made for collaborative action—so that no family is left to navigate this journey alone and every child with Thalassemia is empowered to lead a life free of limitations.
by Dr Nadipalli Sravani, Consultant Oncologist and Haematologist, Ankura Hospital for Women and Children
