Winner Story #1 – International Thalassaemia Day 2018
“As I reflect on my past, present and future as a thalassemia patient, I can’t help but be in complete awe of the clinical advances that have been made just in the past two and a half decades that I’ve been alive. The greatest turning point for me was the day I retired the pump fr pills.
For the first 16 years of my young life, I was on a strict regimen of desferal, given through subcutaneous injection. For the first two-thirds of my life or so, desferal was the only available option for iron chelation.
For two-thirds of my life, I had to carry that pump around with me while a small needle was taped into my arm, leg, or stomach for 12 hours a night, 5 nights a week.
At 5 years old, that meant not understanding much except I just had to do this strange, painful ritual everyday. I didn’t have friends to compare to at the time, but I knew my cousins didn’t have to do it and it was a little confusing and frustrating in a way I couldn’t express whenever I thought about it. It meant having to wake my mom up every time I wanted to use the bathroom in the middle of the night because she was afraid I’d drop the expensive pump into the toilet or on the ground. At 5 years old, it meant once overhearing my mom quietly whispering her grievances to my aunt about how hard it was to take care of me, and feeling an overwhelming sense of guilt for existing.“Read the complete story