This website is dedicated to my son, Kareem Marcellas Jones

Here in Nigeria, growing into adulthood with sickle cell disease used to be considered an impossibility.

Sadly, people like me who were living with sickle cell disease were labeled as “abiku,” which means “born to die soon.” I, too, was told by many that I wouldn’t survive beyond the age of 18. But I refused to let this bleak prognosis and myth define me. My Christian beliefs made me optimistic that I would defy the odds. It left no room for doubt, regardless of anything. I also made sure to prioritize my health and take proactive steps to manage my condition.

The disease’s historically high mortality rate fueled the myth that all sickle cell patients die before adulthood. Before medical advancements, many patients did die in early childhood. However, this didn’t mean that every person with sickle cell disease died young. There were always exceptions, people who beat the odds and lived longer.

The idea that all sickle cell patients die before 18 has always been a myth. Thankfully, medical advancements have since disproven it.

As much as medical advancements have changed over time, sickle cell disease still affects life expectancy. However, thanks to better therapies, many sickle cell patients live into their 40s, 50s, and 60s, and I have even seen patients who lived into their 70s.