Trigger warning: Mentions of suicide

“If I can feel grateful despite the uncertainties I tackle every day, anyone can.”

This is what Parameswari T, a 25-year-old influencer from Trichy wants every follower of hers to feel. Her infectious enthusiasm, coupled with a sharp sense of humour, makes it easy to forget that she has been battling thalassemia major since childhood. She has not only survived the genetic blood disorder but thrived, building a life that inspires thousands online.

What is a thalassemia major?

Thalassemia major, a genetic blood disorder, is passed down when both parents are carriers of the thalassemia trait. Parameswari’s family knows the devastating impact of this condition all too well.

“Both my parents were thalassemia carriers. I had an elder brother whom we lost because of thalassemia. He died when he was three months old because there was no awareness of thalassemia at that time. My paternal uncle also lost his life when he was nine because of the disease.”

“When you have thalassemia, there is a lack of production capacity of RBC and it gets destroyed easily. The only treatment for this is blood transfusions which have to be done every month,” Paameswari explains. “Blood decreases, we inject more, and the cycle continues throughout our lifetime,” she says.

While a bone marrow transplant offers a potential cure, it requires a suitable donor; this wasn’t a viable option for Parameswari during her teen years. “The success rates were significantly lower a decade ago; Now it is better but I have crossed the age limit,” adds Parameswari, which forces her to rely on blood transfusion and medication along with doctor visits for survival.

A wake-up call

While Parameswari now radiates positivity, her childhood was marked by the challenges of living with thalassemia major. “I had the normal life of a sick kid,” she recalls. “I used to get an ailment yearly once, which was followed by hospital visits and medication.”

“I was very idle as well,” she confesses. “I was questioning my existence and I even wished I was never born.”

“My siblings used to look very nice and groomed up and they had their individual lives, but I........

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