Pain and anemia seem to be the loud hallmarks of sickle cell disease. Because many patients and caregivers prioritize addressing the challenges posed by these issues, they tend to overlook infections. But despite their quieter nature, infections pose a grave threat and stand as the leading cause…
Living with sickle cell disease presents unique challenges that can impact various aspects of one’s life, including romantic relationships. The experiences of those with sickle cell disease vary greatly, which affects how each of us approaches and maintains our relationships. In over three decades of living with the…
Living with sickle cell disease for nearly 38 years has taken me through various phases: an initial phase of cluelessness about sickle cell complications, a phase marked by fear of those potential complications, and the current phase, in which I’ve managed to conquer that fear. During my childhood…
As a survivor of sickle cell challenges and a passionate advocate for sickle cell disease prevention and a cure, if I were put under duress to choose between prevention and a cure, I would prioritize prevention, despite many alternative viewpoints. The reason is because prevention is paramount to reducing…
In people with sickle cell disease, episodes of pain are often referred to as sickle cell crises and can lead to frequent hospitalizations. These crises may be precipitated by various triggers. As I matured, I became aware of what triggers a crisis for me. I learned to…
Growing up, health professionals and others often told me I didn’t look like a sickle cell patient. Their remarks left me wondering what was so unusual about my appearance and what I was expected to look like as someone living with sickle cell disease. One vivid memory from…
Christmas has grown beyond its origins as a Christian celebration of Jesus’ birth. It now unites communities and fosters a sense of togetherness across cultural backgrounds, religious beliefs, and geographical locations. The unique culture of Christmas, with its twinkling lights, festive decorations, and colorful trees adorned with ornaments, along with…
Disability carries a strong stigma, and there’s widespread global ignorance about its meaning. While many associate disability solely with physical or mental impairments, the true definition encompasses more. Many Africans with…
In the past, I would eagerly anticipate news of drug approvals for the management of sickle cell disease. The potential of new medications usually offered a glimmer of hope for sickle cell patients like me. The possibility that they could improve management of the disease and positively affect the…
Having a child with sickle cell disease can prompt many emotions for parents, particularly guilt. In this column, I’ll discuss some of the factors that contribute to this type of guilt and provide guidance on how to cope with it. In my many years of living with sickle…
Get regular updates to your inbox.