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…
The Sickle Cell Crusader - a Column by Oluwatosin Adesoye
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…
Sometimes a childhood memory will return and leave me stunned. Last week, I found myself thinking about a medication I had taken every day for the first 11 years of my life: prednisolone. A doctor had prescribed it when I was about 1 year old, and I continued taking it…
I wasn’t supposed to be writing my next column yet. In fact, I specifically requested that this piece be published on June 19, World Sickle Cell Day. For me, the day is more than an awareness campaign. It is a time to celebrate the resilience, strength, and courage of millions…
“Why do you have to write about your health on social media?” My brother asked me that question many years ago in our family WhatsApp group after I started openly discussing my sickle cell disease (SCD) online. At the time, I understood his concern. Many families still associate SCD…
Over the past month, Nigeria, where I live, has witnessed several painful losses. One that shook many people was the death of a popular actor, reportedly due to metastatic kidney cancer. News of his death spread quickly across the entertainment industry and on social media. Many Nigerians admired him for…
Recently, I doubted I’d be able to write this column. My knees had become swollen, immovable, and painfully untouchable. The slightest movement sent sharp pain through my body. Just sitting up was difficult, let alone writing. The episode began with malaria, which I had treated the previous week. Soon after,…
My sickle cell disease advocacy journey began more than a decade ago, but it has changed shape many times. I have lived through a silent phase, an angry phase, a loud phase, a tired phase, and, finally, a more understanding phase. In my early teens, after learning about my…
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