Thalassemia, a genetic blood disorder characterized by the body’s inability to produce sufficient hemoglobin, presents significant challenges for affected individuals and their families. However, India has made remarkable strides in managing and treating thalassemia, making comprehensive care accessible across the nation. Dr. Venkatesh Ekbote, Director of Clinical Hematology & BMT Services at Kamalnayan Bajaj Hospital, Aurangabad, sheds light on the current treatment options available for thalassemia patients in India.
Understanding Thalassemia
Thalassemia is a condition present from birth, necessitating lifelong management. It primarily involves regular blood transfusions and managing iron overload, a side effect of both the disease and its treatment. The advancements in thalassemia care in India have ensured that patients receive both primary and curative therapies, improving their quality of life.
Primary Therapy: Diagnosis and Regular Management
The first step in managing thalassemia is accurate diagnosis. Once diagnosed, the focus shifts to maintaining the child’s overall physical, mental, and skeletal growth. Regular blood transfusions are crucial, but they lead to iron overload. This excess iron can damage vital organs if not managed properly.
Iron Chelation Therapy
The government provides iron chelators free of cost to combat iron overload through civil hospitals. These medicines help reduce excess iron from the body, thereby preventing complications. Parents are advised to register their child with a thalassemia society or care program to access these free treatments. Registration ensures free access to blood transfusions and iron chelation therapy, significantly alleviating the financial burden on families.
The Role of Hematologists
Consulting a hematologist is critical once a child is diagnosed with thalassemia. A hematologist confirms the diagnosis and guides the family through the registration process and the initiation of primary care. The support from a hematologist and the thalassemia care societies is indispensable in managing the condition effectively.
Curative Therapy: Bone Marrow Transplantation
While primary therapy focuses on managing thalassemia, curative therapy aims to eliminate the disease. Bone marrow transplantation (BMT) is currently the only curative treatment for thalassemia. According to Dr. Ekbote, approaching a transplant physician within the first five years of a child’s life yields the best results, with success rates exceeding 90-95%.
Bone Marrow Transplant Process
The process of bone marrow transplantation involves multiple steps and requires thorough preparation. A transplant physician and a hematologist will guide the family through this process. Although complex, the potential to cure thalassemia makes it a worthwhile option for eligible patients.
Conclusion
India’s self-sufficiency in thalassemia care, supported by the government’s provision of free iron chelators and blood transfusions, ensures that patients receive the necessary primary care. The availability of bone marrow transplantation as a curative option offers hope for a complete cure, particularly when pursued early in a child’s life. Parents of children diagnosed with thalassemia are encouraged to consult hematologists and take advantage of the available comprehensive care programs, ensuring their children’s better quality of life.
Thalassemia care in India has come a long way, and with continued advancements and support, the future looks promising for patients and their families.
About DATRI:
DATRI Blood Stem Cell Donors Registry, a not-for-profit organisation, has facilitated more than 1401 Blood Stem Cell Donations to date. The journey began in the year 2009 to find unrelated matched donors for patients with leukaemia, Thalassemia or blood disorders whose life is dependent on an unrelated donor to survive. DATRI, India’s largest Blood Stem Cell Donors Registry, has more than 5,59,517 donors registered. DATRI is working towards creating a wide and diverse database of potential Blood Stem Cell Donors that can be accessed by any patient living anywhere in the world in need of a Blood Stem Cell Donation. Any healthy individual between the age of 18 years to 50 years can register as a blood stem cell donor with DATRI and potentially become a lifesaver when they’re found to be a match for a fatal blood disorder patient.
For more information about thalassemia click the links below to watch Dr. Venkatesh Ekbote’s interview