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New Delhi, December 03 , 2024:
Thalassemia, classified as a disability under India’s Person with Disabilities Act, presents one of the most severe genetic challenges in the country. While we promote the rights and well-being of persons with disabilities this International Day of Persons with Disabilities, let us also pause and support Thalassemia patients in India.
As the world grapples with the implications of Thalassemia, India is at the epicentre, burdened with over 10,000 new cases of Thalassemia Major annually and an estimated 42 million carriers of the beta thalassemia trait. Despite this, India is making strides, driven by organisations like DKMS BMST Foundation India, that are working to alleviate the struggles of such individuals through stem cell transplantation and awareness initiatives.
Hemoglobinopathies, which include blood disorders like Thalassemia, not only disrupt the lives of patients but also create a massive socio-economic challenge for families and healthcare systems. These disorders, marked by regular blood transfusions and iron chelation therapy, leave patients and their families facing lifelong battles for care, access, and financial resources.
Dr. Nitin Agarwal, HoD, Donor Request Management, DKMS BMST Foundation India said, “Disabilities caused by genetic conditions like Thalassemia require focused attention. While these conditions remain one of the most common genetic disorders globally, India, as the Thalassemia capital of the world, faces unique challenges. Blood stem cell transplant is a treatment option that not only offers the potential for a cure but also removes the financial and emotional burdens of repeated transfusions. Unfortunately, awareness of prevention strategies and access to transplantation remains limited, which is why we need to do more to address this issue.”
Aditi Mahato, hailing from a small village near Raipur, Chhattisgarh, was diagnosed with beta thalassemia major at just five months old, a condition that breaks down red blood cells and causes life-threatening drops in hemoglobin levels. Her life revolved around painful and frequent blood transfusions. Her parents faced endless struggles, traveling to multiple hospitals and blood banks to find compatible blood. The only permanent solution for Aditi was, a stem cell transplant, which was beyond the family’s financial means.
This is when the family learnt about DKMS-BMST Thalassemia Program. Through this program’s free HLA testing initiative, Aditi and her family could undergo HLA testing. Unfortunately, no full match donor was found within her family or the unrelated donor registry. However, under the guidance of Narayana Health’s Pediatric Blood and Marrow Transplantation team, she successfully underwent a half-match transplant, with her father serving as the donor. The transplant, conducted on March 13, 2022, at Narayana Health, Bengaluru, was life-changing for Aditi, who now lives a healthy and independent life.
Patrick Paul, CEO, DKMS BMST Foundation India said, “India’s fight against genetic disabilities like Thalassemia is a mission that requires collaborative effort. Our Access To Transplantation program is designed to support underprivileged families in accessing much needed medical interventions. By organising Thalassemia camps in partnership with NGOs and clinics, we have been able to empower families like Aditi’s to overcome economic and accessibility barriers. While finding a full match donor remains challenging, our work in supporting haploidentical (half-match) transplants ensures no patient is left without hope. Over 14,214 patients and families have benefited from free HLA typing, leading to 350 successful transplants in the last three years.”
India’s battle against blood disabilities like Thalassemia Major is a larger reflection of the nation’s need for widespread awareness. Blood stem cell donation, a safe and life-changing process, remains the cornerstone of addressing this crisis. As the International Day of Persons with Disabilities serves as a reminder of the rights and dignity of individuals living with disabilities, organisations like DKMS BMST Foundation India are working towards a future where fewer families endure the hardship of untreated genetic disorders.
HealthySoch
