Creating Gene brotherhood for rare gift of life

GeneBandhu’s database is helping big in matchmaking for bone Marrow Transplant

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New Delhi: Tejveer Singh and Zorawar Singh may be unrelated and separated by birth and status, they are inseparably bound up together. They are now gene buddy. Gene Bandhu, an NGO, that maintains a database for gene match making, brought them together for a rare act of humanity. Zorawar Singh, a daily wage earner, possessed the magic cells for the life saving bone marrow transplant on Tejveer.

The match made also exemplifies the adage: a friend in need is a friend indeed. Tejveer, 18 yr old wrestling aspirant from Hissar, was diagnosed with Acute Lymphoblastic Leukemia (ALL), 4 years back. In the grip of this fatal disease, his only hope was bone marrow transplant for which Human Leucocyte Antigen match is a must. And finding one is no less than miracle.

Tejveer Singh had the ambition to represent India at Olympics as a wrestler. Unfortunately, he was diagnosed with this life-threatening disease, which occurs when a bone marrow cell develops errors in its DNA. No one from the family matched. So, finding a matched unrelated donor (MUD) was only way out. And lo and behold! Zorawar popped as precious hope.

In the midst of agony, the doctors gave them a clue to Zorawar. They had found a MUD match on the GeneBandhu registry and the donor was Indian. With their expertise and extensive database, GeneBandhu, identified Zorawar Singh, a daily wage carpenter, Tejveer’s potential genetic friend.

It is 3 years later, Tejveer is healthy and leading a normal life. As per Government norms, a registry cannot disclose the identity of the donor and recipient to each other for a year after the transplant. GeneBandhu also took an initiative to organize a meeting between the donor and the recipient after 3 years of the transplant. Tejveer and Zorawar met each other and commemorated their unification.

When they met Tejveer was full of gratitude for Zorawar. Tejveer, the survivor, said, ‘I have met my real-life hero and I am overjoyed, blessed and cheerful to get an opportunity to spend quality time with my gene-buddy. I am extremely thankful to GeneBandhu for introducing true hero to me.’

Zorawar Singh, the Donor, said, ‘If I can save a life, I will help in whatever way I can. I will do as God wills. It doesn’t matter if I lose 2 days of wages or have to give my bone marrow. I am pleased to see Tejveer fulfilling my dream as I also wanted to be a pehelwaan (wrestler).’

Dr Vimarsh Raina, Founder &President, GeneBandhu, said, ‘Every year, India has 1.2 million cases of cancer and life-threatening blood disorders like thalassemia and a plastic anaemia. These disorders and many more can easily be treated with a bone-marrow transplant. Stem cells from donors at the right time can save 60-80% of children with cancers and blood disorders. We, at GeneBandhu, strive to rise above the fear of blood disorders by providing a ready solution to all blood disorders, by building an extensive and diversified data pool of voluntary stem cells donors and aspire to see the next transplantation under 10 lakhs INR.’

Bone marrow harvesting enables the extraction of stem cells, which are the seeds of healing for such blood and genetic disorders. It is not a painful process as it was a decade back but the awareness of this is limited to the families who suffer from this painful ordeal themselves. Transplant technology in India is highly specialized and advanced but due to the lack of registered donors, support and action thousands of people surrender to the disease. GeneBandhu is assiduously working towards bridging this gap through their successful self-made database of people from different ethnic and geographical backgrounds.

In fact, India is still a wellspring of untapped genetic knowledge; there is a lack of awareness about the concept itself. Finding a Human Leucocyte Antigen(HLA) match for bone marrow transplant is no less than a miracle where there is little data of Indian genotype and a handful of Indian registries. GeneBandhu, an NGO has successfully maintained an incredible database in the specialized sector and created a stem cell registry by recruiting voluntary donors over the years.

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