At just five months old, Aditi Mahato from a small village near Raipur, Chhattisgarh, was diagnosed with beta thalassemia major, a life-threatening blood disorder that requires frequent blood transfusions. Her life was marked by endless hospital visits and the constant search for compatible blood, a struggle that burdened her family both emotionally and financially. For Aditi, the only permanent solution was a stem cell transplant, but the high cost made it seem out of reach.
That’s when Aditi’s family learned about the DKMS-BMST Thalassemia Program, which offers free HLA testing and assistance to families in need. Through this program, Aditi and her family were able to undergo HLA testing, but unfortunately, no full match donor was found in their family or the donor registry. However, under the guidance of Narayana Health’s Pediatric Blood and Marrow Transplantation team, Aditi underwent a half-match transplant with her father as the donor on March 13, 2022. This life-changing procedure marked the beginning of a new, healthy, and independent life for Aditi.
Aditi’s story is just one of many. India is home to over 10,000 new Thalassemia Major cases annually and an estimated 42 million carriers of the beta thalassemia trait. With such a heavy burden, organizations like DKMS BMST Foundation India, a joint venture of BMST (Bangalore Medical Services Trust) and DKMS, one of the world’s largest international blood stem cell donor centres, are working to alleviate the struggles of Thalassemia patients, providing access to stem cell transplantation and raising awareness.
Dr. Nitin Agarwal, Head of Donor Request Management at the foundation, explained that while Thalassemia remains one of the most common genetic disorders globally, India, as the Thalassemia capital of the world, faces unique challenges. “Blood stem cell transplants offer a potential cure, but awareness and access remain limited,” he said.
Patrick Paul, CEO of DKMS BMST Foundation India, highlighted the need for collaborative efforts in combating Thalassemia. “Our Access to Transplantation program supports underprivileged families by helping them overcome financial and accessibility barriers. Over 14,214 families have benefited from free HLA typing, leading to 350 successful transplants in the last three years,” he noted.
As India continues to battle the genetic challenges of Thalassemia, the stories of individuals like Aditi offer hope. With more awareness, medical advances, and community support, the future for Thalassemia patients looks brighter.
