Raksha Bandhan 2025: Honoring Sibling Ties, Exceptional Gift - Opportunity for a New Life
In a country where over 10,000 new children are born annually with thalassemia, a hereditary blood disorder leading to severe anaemia, access to life-saving blood stem cell transplants remains limited due to financial and logistical barriers.
Patrick Paul, Chairman of DKMS Foundation India, has highlighted the need for high-resolution HLA typing and the challenge of finding a match due to India's genetic diversity. Only 0.09% of the Indian population of the relevant age is registered as a blood stem cell donor.
However, progress is being made. A breakthrough came in the form of an HLA typing camp jointly conducted by DKMS Foundation India and Narayana Health City in February 2022. This event aimed to overcome medical, financial, and infrastructural barriers that limit access to life-saving transplants for patients with blood disorders such as thalassemia major and aplastic anaemia.
The DKMS Foundation India's Access to Transplantation Program supports families who cannot otherwise afford or access transplantation. This program funds and facilitates access to transplant procedures, including donor matching and transplant logistics. Success stories, such as siblings donating blood stem cells to save each other, illustrate the program’s positive impact in giving children a second chance at life.
For instance, Ayan Khan, diagnosed with thalassemia major at birth, found hope through an HLA-typing camp organized by DKMS Foundation India. His elder sister, Al Shifa, was found to be a perfect HLA match and donated blood stem cells to save Ayan. Two years after the transplant, Ayan is reported as completely disease-free and no longer dependent on blood transfusions.
Similarly, Papali Gaan, born on March 15, 2015, suffered from Thalassemia Major. Her younger brother, Om Prakash, emerged as a perfect match and donated his blood stem cells. Post her transplant, Papali is living her second chance at life without needing a blood transfusion.
DKMS Foundation India's efforts extend beyond direct patient support. They also run awareness campaigns and register potential blood stem cell donors, especially to increase representation of Indian donors in global registries, improving the chances for unrelated matched donors for patients without familial matches.
For scientific and clinical progress supporting these efforts, DKMS also funds innovative research projects in hematopoietic stem cell transplantation and blood cancer therapies through grants like the DKMS John Hansen Research Grant.
The program’s combination of patient support, donor registry, awareness campaigns, and research funding collectively contributes to expanding access and improving survival for patients with thalassemia major and other blood disorders in India. For more information, visit the official DKMS India website or look up current news articles and reports on their patient programs and donor registration drives.
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