
Climbing Beyond Limits: How I Defied Thalassaemia and Embraced Life
Patient
Malaysia
My name is Fazalena Johari, and I am from Malaysia. At six months old, before I even learned to walk, I was diagnosed with HBE Beta Thalassaemia. Now, at 42 years old, I have a bachelor’s degree in social science and work as a Research Officer at the Clinical Research Centre of Sarawak General Hospital. My work focuses on Cardiac Imaging, including Cardiac MRI and Dual Source CT (DSCT).
Reflecting back on my younger years, I vividly recall the painful loss of a friend to thalassaemia – an event that struck fear into my heart, making me believe I might be next. This loss solidified my resolve to face thalassemia head-on and with optimism; I vowed to triumph in this fight.
As a teenager, thalassaemia felt like a chain that restricted me from countless activities. I wasn’t naturally active and actively avoided outdoor or sports events. However, with time, I learned that my capabilities were far greater than I had imagined.
The Mount Kinabalu Challenge in 2007, organized by Malaysia’s Ministry of Health, was a turning point. Reaching the summit was an achievement beyond my wildest dreams. Since that milestone, my outlook on life has been overwhelmingly positive. I’ve taken up hiking with friends, participated in running events—accomplishing up to 12km—and engaged enthusiastically in Zumba classes. My condition does not define me or limit my aspirations; I am determined to lead a life as fulfilling as anyone else’s.
I am acutely aware of the societal stigma that shadows those living with thalassaemia. Not everyone can accept us and not all have knowledge about this condition. This is why improving societal understanding is crucial. As someone afflicted by the disease, I refuse to conceal my status; instead, I use it as an opportunity to educate others and foster greater awareness.
Since 2005, I have been actively involved with the Federation of Malaysia Thalassaemia Societies. During my talks and while sharing my experiences living with thalassaemia, I consistently encourage fellow patients to adopt a positive mindset and have faith in their abilities.
It is crucial not to view thalassemia as a burden but rather as a challenge to be surmounted, demonstrating that we can lead lives as normal as anybody else’s. Additionally, I stress the importance of knowledge. Being an educated and well-informed patient is imperative for managing one’s health effectively.
All our dreams can become reality, provided we have the courage to pursue them.
Fazalena Johari