Patients’ stories


”I consider it as divine intervention that this year’s theme resonated so well that it gave me immense strength and courage to pen down my life in a short story, which I believe, covers all the 3 bases – ‘Be aware, share, care’.Born in Punjab in the summer of 94′, to two sweet souls who had no clue what was staring them right in their face in the near future. As, it was not until my 5th birthday, that my parents and their respective families had even had heard of the word Thalassemia.

Earliest symptoms that I faced were recurring fatigue, pallor, and taking ill time and again which had nudged my parents to get me consulted in one of the best tertiary care hospitals in Northern India. After being put through intensive tests, it was to their utmost surprise and shock that, I was then diagnosed with Beta-Thalassemia and them as the trait carriers.

This further takes a tinge of a bit more sadness as it was around the same time that, that my beautiful mother was in her 3rd trimester with my youngest sibling, who ended up having the same condition as mine.

With my baby brother not being a bone marrow match, my parents now had 2 very young kids with chronic blood disorders and a lot to learn and adapt to.

A big thanks to them though, for not giving up on us and simply putting their heads and hearts together to give us the best life that anyone could’ve ever asked for.

28 years later, trust me, a lot has changed for good in the field of Medicine and Thalassemics like me, now, have an equal chance at living a life as normal as any other healthy individual. But, this doesn’t change the fact that, a great deal of work still needs to be done to bring its incidence down around the world.

So, by sharing this piece of my heart with you all, my sole intention is to highlight:

1) The importance of disseminating knowledge – On how two normal looking,  healthy individuals can still have recessive traits which can get expressed in their kids, turning into serious medical conditions.

2) The importance of having difficult conversations of knowing one’s Thal status with your loved ones, before entering marital union, which can prevent(in this case) the need for- life long blood transfusions, health complications, hospital visits and financial burdens etc.

3) The importance of de-stigmatizing the society by talking about it more openly with your family and friends.

Together we can beat this, everyone 🙂

A change of perspective is all we need – so kindly get tested!

Happy International Thalassemia Day 2023! :)”

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