Together We Can Beat This, Everyone!
Patient
Canada
I consider it 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 3 bases of the ‘Be Aware. Share. Care’ slogan.
I was born in the summer of 94 in Punjab, to two dear souls who did not know what awaited them in the near future. It was only on my 5th birthday that my parents and their respective families had even heard the word thalassaemia.
The first symptoms I faced were recurring fatigue, paleness, and recurring bouts of sickness, which prompted my parents to get me checked at one of the best tertiary hospitals in North India. After undergoing intensive tests, to their utter surprise and shock, I was diagnosed with beta thalassaemia and they were classified as carriers of the trait.
This is all the sadder as my wonderful mum was pregnant at the same time in her third trimester with my youngest sibling who had the same condition as me. As my little brother didn’t have a matching bone marrow, my parents now had two very young children with chronic blood disorders who had a lot to learn and adapt to. A big thank you to them for not giving up on us and just putting their heads and hearts together to give us the best life anyone could ask for.
28 years later, believe me, a lot has changed for the better in medicine and people with thalassaemia like me now have an equal chance in life as any other healthy individual. But this doesn’t change the fact that, a great deal of work still needs to be done to reduce the incidence of the disease worldwide.
In 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 thalassaemia status with your loved ones, before entering marital union, which can prevent (in this case) the need for lifelong 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 get tested!
Milanpreet Kaur
