New Delhi: Thalassemia, a common genetic blood disorder causing severe anemia, affects tens of thousands of families across India. While life-sustaining treatments exist, they come with devastating complications. What is the reality of this disease, and where does the hope for a cure lie?
India Today spoke with Dr. Dinesh Pendharkar, Director of Sarvodaya Cancer Institute at Sarvodaya Hospital, Faridabad, to understand the challenges and breakthroughs in treating thalassemia.
The Scale of the Problem
"Thalassemia is characterized by the body's inability to produce normal hemoglobin, the protein that carries life-saving oxygen," explains Dr. Pendharkar. It's a genetic condition passed down when both parents are "silent carriers" of the gene.
The statistics are sobering. "More than 70,000 children are living with this disease in India, with 10,000 to 12,000 new cases emerging annually," he notes. "The disease manifests very early in childhood, with a child's failure to thrive, persistent paleness, and frequent infections."
The Double-Edged Sword of Treatment
According to Dr. Pendharkar, the immediate need for repeated blood transfusions is the only way to save a child's life. "Constant blood support remains the only life-saving measure available," he says. "A need that starts at once a month can quickly increase to twice a month, totaling 15-25 transfusions a year."
However, this lifeline becomes a life-threatening nightmare. "Each transfusion deposits a certain amount of iron in the body," Dr. Pendharkar clarifies. "This iron steadily accumulates in vital organs like the heart, liver, and kidneys, leading to their malfunction, and ultimately, death." While iron-removing drugs (chelation) offer some relief, they are not a cure.
Beyond Management: Avenues for a Cure
"Fortunately, we have moved beyond just managing thalassemia," states Dr. Pendharkar. "We now have two key treatments that offer a potential cure: Bone Marrow Transplantation (BMT) and Gene Therapy."
Bone Marrow Transplant (BMT) offers a cure by replacing the patient's faulty blood-forming stem cells with healthy ones from a donor.
A promising new approach, Gene Therapy, is also on the horizon and is now being developed in India to enhance accessibility.
The Human Cost and the Ultimate Solution
Dr. Pendharkar emphasizes that thalassemia is not just a blood disease. "It affects families socially, financially, and emotionally," he reflects. "It becomes a constant travel story between blood banks and life, a journey that robs children of their education, social functions, and future. It is a devastating disease."
The best way forward, he concludes, is prevention. "Society must be aware of the high prevalence of carrier states. Genetic testing must be mandatory for all new marriages and families to stop this preventable tragedy."
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