Living with sickle cell disease in Australia has a way of reshaping many personal decisions in ways our healthcare system is still learning to fully understand. As a young adult living with sickle cell anaemia, my life has been shaped by the physical, social, and emotional challenges that come with the condition, alongside the ongoing responsibility of advocating for myself within a medical system that does not always fully comprehend the complexity of this inherited blood disorder.
I was diagnosed with sickle cell anaemia (HbSS), an autosomal recessive condition, at just one year old after numerous hospitalisations and admissions.¹ Symptoms such as jaundice, back and lower limb pain quickly became part of everyday life, accompanied by fatigue, unpredictable pain crises, and missed school days, something that surprised my friends because school was actually something I loved.
Navigating this condition meant making decisions that changed my family’s life in ways my parents never anticipated. My mother became a stay-at-home parent to support my care. There were fears that my brother would become the “glass child,” the sibling whose needs are often overlooked. There was also hesitation around encouraging me to participate in activities like weekend soccer because of my low energy levels and physical limitations.
Yet the greatest challenge has not been the countless cannulations or blood draws I have endured, but rather the lack of awareness surrounding sickle cell disease in Australia and its impact on the estimated 8,500 people living with the condition each day.² Many people are unfamiliar with the symptoms or the urgency required during a vaso-occlusive crisis. Even within healthcare settings, severe chronic pain in someone with a history of sickle cell disease can sometimes be dismissed as simple musculoskeletal discomfort, without further investigation or pathology testing.
In moments of severe pain and distress, advocating for appropriate medical attention can become incredibly difficult when you are already struggling physically and emotionally.
Despite these challenges, living with sickle cell disease has shaped me in ways I never expected. It has taught me how quiet suffering can be, and how easily illness can go unseen. Over time, the guilt I once carried about my condition transformed into a desire to become a voice for others living with sickle cell disease. Advocacy is often found in the small moments, taking the extra time to explain your condition, having difficult conversations, or speaking up so the next person feels empowered to use their own voice too.
For now, sickle cell disease will always be part of my life, after all, it is written into my DNA, but I refuse to let it define or limit the incredible possibilities my life can hold. Australia’s growing commitment to newborn screening programs and the future potential of gene therapy offers hope for people living with this condition: hope for better care, improved quality of life, and a future where individuals with sickle cell disease are finally seen and heard in the ways they deserve.
— Nana Koranteng-Gyasi (Age 24)
¹ Sedrak A, Kondamudi S. Sickle Cell Disease. StatPearls Publishing; 2018.
² Nwokeocha S, Haysom HE, Wellard C, et al. “Economic burden of sickle cell disease in Australia.” Internal Medicine Journal. 2025;55(8):1251–1257. doi:10.1111/imj.70092.