Thalassaemia Fighters Are Changing the Narrative in Sri Lanka

My name is Shaluka Hiran Premachandra, born in 1992 in the scenic area of Matale, Sri Lanka. Unfortunately, my parents were both carriers of Thalassaemia, a fact difficult to criticize given the limited awareness and medical checks at that time. Back then, 30-40 new Thalassaemia cases were identified annually within the Sri Lankan medical system. I have since dedicated myself to educating others about Thalassaemia inheritance to prevent similar situations for future couples.

During my childhood, Thalassaemia treatment in Sri Lanka was rudimentary, and there was a pervasive negative perspective on patients’ lives and lifespans. No specialized units or centers existed; treatment was conducted in general hospitals. Nevertheless, due to my parents’ diligent care and attention to my treatment, I have successfully managed my condition for over three decades. Their support provided me with the courage and means to shape my own path.

Many Thalassaemia patients in Sri Lanka endure significant challenges and exclusion within educational institutions and broader society. The support of family and community members is crucial; their role is instrumental in enabling these individuals to lead ordinary lives.

After obtaining a bachelor’s degree in sociology from the University of Kelaniya, I am now pursuing a master’s degree in social work at the National Institute of Social Development in Sri Lanka. My participation in the annual conference of the Thalassaemia International Federation in 2017 fortified my conviction about establishing a patient-focused organization in my country.

This vision came to fruition with the inception of the Lanka Thalassaemia Organization in 2021, which unites Thalassaemia units across Sri Lanka and operates as a non-governmental entity as of 2024. Serving as its founder and national coordinator brings me immense gratification and fulfillment.

In parallel with this commitment, I serve as a drug prevention treatment and rehabilitation officer at the National Dangerous Drugs Control Board in Sri Lanka. I take great pride in leveraging both my academic background and personal journey to enhance life for those living with Thalassaemia throughout our nation. Moreover, I aim to obtain a Ph.D. to further contribute academically and professionally while continuing my advocacy for improved treatment options and educating society about this condition to promote its prevention effectively.

Shaluka Hiran Premachandra