Is sickle cell disease (SCD) a blessing or a curse? I came across this question on social media a few days ago. As I prepare to turn 40, my answer, shaped by four decades of living with SCD, is that, to me, it is neither. It has become part…
The Sickle Cell Crusader - a Column by Oluwatosin Adesoye
Last week, every deep breath brought excruciating chest pain that felt as though my ribs were crashing into one another. The symptoms reminded me of acute chest syndrome, a serious sickle cell disease (SCD) complication I have rarely discussed on my platform. As I recovered, I found myself thinking…
When I joined Bionews, the publisher of this website, in 2023 as a freelance sickle cell disease (SCD) columnist, I experienced something that stayed with me. As someone living with a rare disease, I wasn’t the only person like me in the workplace. Several colleagues also lived with chronic…
Hospital admissions can feel overwhelming when you live with sickle cell disease (SCD), regardless of where you receive care. Here in Nigeria, the experience can differ from what someone might see in the United States, but the emotional weight of an admission can feel remarkably similar. Research commonly identifies…
Keeping a job while living with sickle cell disease (SCD) can be challenging, especially when you have moderate to severe disease. Symptoms and complications can make it harder to maintain regular work hours or remain in a demanding career. For many warriors, unemployment and financial hardship can add to…
Previously, I’d never publicly shared my experiences with delayed puberty and how deeply it affected me. Looking back, I realize that it was an important part of my journey with sickle cell disease (SCD). I hope my story will help young warriors and caregivers understand this often-overlooked complication and…
Can people who don’t have sickle cell disease (SCD) advocate for the community? Absolutely. However, I think there is an important distinction that deserves attention. Usually, most advocates are patients, caregivers, healthcare professionals, or family members of people living with the disease. However, I’ve recently seen an influx of…
I recently asked myself a simple question: What does it really mean to live well with sickle cell disease (SCD)? Can someone with a severe, lifelong condition genuinely say they are living well? After reflecting on my journey, I realized that living well has little to do with having…
As both a physician and someone living with sickle cell disease (SCD), I spend a great deal of time reading SCD-related medical literature. Recently, while reviewing several publications, both old and recent, on vaso-occlusive crises, I noticed recurring statements that made me pause: Acute sickle cell pain and vaso-occlusive…
What began as a season of devastating complications, uncertainty, and hopelessness unexpectedly became the pathway to purpose and career diversification for me. Toward the end of 2017, my life changed abruptly. I developed bilateral subchondral fractures in my knees due to complications of sickle cell disease. Almost overnight, I…
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