On this International Day of Persons with Disabilities, as we advocate for the rights and well-being of individuals with disabilities, it is crucial to bring attention to Thalassemia, one of the most prevalent genetic disorders in India. Classified as a disability under India’s Person with Disabilities Act, Thalassemia affects thousands of lives each year, requiring comprehensive and innovative approaches for care and treatment.
India faces a staggering burden, with over 10,000 new cases of Thalassemia Major annually and approximately 42 million carriers of the beta thalassemia trait. Tackling this challenge, organisations like DKMS BMST Foundation India are at the forefront, promoting awareness and providing life-saving solutions such as stem cell transplants for affected individuals.
Understanding the Impact of Thalassemia
Thalassemia, a severe blood disorder, disrupts patients’ lives and imposes significant socio-economic challenges on families. Managing this condition often requires frequent blood transfusions and lifelong iron chelation therapy, which strain financial resources and emotional resilience.
Dr. Nitin Agarwal, HoD, Donor Request Management at DKMS BMST Foundation India, highlighted, "India is the Thalassemia capital of the world, and genetic conditions like these require focused interventions. While blood stem cell transplants offer a potential cure, awareness and accessibility remain important hurdles. Expanding access to these life-saving procedures can significantly reduce the burden of repeated transfusions on patients and families."
A Life Transformed: Aditi’s Story
Aditi Mahato, a young girl from a village near Raipur, Chhattisgarh, faced the hardships of beta thalassemia major from just five months old. Her parents endured relentless struggles, traveling to hospitals and blood banks for transfusions. However, hope emerged through the DKMS-BMST Thalassemia Program, which provided free HLA typing for Aditi’s family.
When no full-match donor was found, Aditi’s father became a half-match donor for a haploidentical transplant conducted at Narayana Health, Bengaluru. On March 13, 2022, Aditi underwent a life-changing procedure, and today, she leads a healthy and independent life.
Patrick Paul, CEO of DKMS BMST Foundation India, said, “Our mission is to support families like Aditi’s by addressing barriers to treatment. Through initiatives like free HLA typing and haploidentical transplants, we ensure no patient is left without hope. In the last three years, over 14,214 patients have benefited, with 350 successful transplants delivered."
Collaborative Action for a Better Tomorrow
On Disability Day, organisations like DKMS BMST Foundation India emphasise the need for:
Blood stem cell donation remains a simple, safe, and life-saving process that can dramatically change lives. This Disability Day, let us commit to empowering those living with genetic disabilities by raising awareness, registering as donors, and supporting innovative medical interventions.
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