I was a year old when I was diagnosed of Thalassemia. My brother is a thal minor. At some stage, a bone marrow transplant was considered. However, we weren’t a match. Back then, the concept of finding matched donors in India was barely there. So we settled in with Thalassemia and the resultant blood transfusions for the long haul.
My family raised me like any other child. I was never made to feel that I have an agency in my body that hinders a ‘normal’ life. I grew up with a lot of love and warmth. In school, I fell in love with table tennis. The hobby transitioned into a passion and I represented my state in the game. My friends and family often said ‘Tum karo, hum piche khade hai’ (You go on and do it, we are backing you).
Of course the transfusions haven’t always been kind. I have battled skin rashes and allergies, strange reactions that have led to incessant vomiting and fatigue, but I have never given up.
One of the bigger highlights of my life was when The Wishing Factory organised a contest for people battling thalassemia and I won. A ‘Thalassemia Warrior’, they called me. I want to live up to that title. While I wish to become an accomplished lawyer, a long standing dream is to give something back to the community.
Blood transfusions are too difficult at the moment. Every patient is expected to take the COVID test first. Once cleared, one can move for the transfusion. Each test costs close to 4000 INR; many cannot afford it. I see so many NGOs stepping up and helping these people. I wish to start my own someday.
In India, we tend to match kundlis of two people before they get married, I believe it is much more important that their blood reports are matched first. If both are thalassemia minor, they must not marry. It is unfair to the child they will bring to the world who may be diagnosed with the disorder. I have fought it for 21 years now and will continue to do so. It doesn’t mean every other child has to do it. This can be resolved, we can get on the top of this disease, together.
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