“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…
The Sickle Cell Crusader - a Column by Oluwatosin Adesoye
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…
The quiet, creeping isolation that comes with living with sickle cell disease is a reality we rarely discuss enough. When you live with a moderate to severe form of the condition, isolation becomes a recurring part of your existence. Through lived experience, I have learned that this isolation is…
A sickle cell crisis isn’t a polite guest, and it often arrives unannounced. Over the years, I’ve learned that my crises either come on suddenly or build gradually, with subtle clues or a red alert. Recognizing these warning signs of a sickle cell pain crisis early is the first…
“When can I tell my child that they have sickle cell disease?” As a physician living with the condition, this remains one of the most frequent questions I receive from parents and caregivers. Many parents delay that conversation until their children reach their teenage years or older. Some only…
Leg ulcers are one of the most distressing and disabling complications of sickle cell disease (SCD). These open wounds mostly affect patients with sickle cell anemia (HbSS), although people with any type of SCD may experience them. The severity varies widely; some heal in weeks, while others…
Pursuing a purposeful life while living with moderate to severe sickle cell disease can be very tough, as it presents a unique set of challenges. When the pain is frequent and the complications are real, it’s easy to lose track of one’s goals. However, I’ve learned that living with purpose…
Being a medical doctor who also lives with sickle cell disease remains one of my greatest achievements. Becoming a physician, despite the odds, was not an easy journey. It demanded resilience, relentlessness, dedication, and hard work. Nearly a decade into my medical career, I’ve realized that being a doctor with…
Recent Posts
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- Why I refused to stay silent about my sickle cell disease
- Stem cell transplant for SCD beats gene therapy on cost: Study
- Fulcrum scraps sickle cell drug after FDA raises safety concerns
- Elevated levels of hormone EPO tied to risk of blood clots in SCD: Large study
- Use of disease-modifying therapies on the rise in SCD: US study
- Reflections on grief, loss, and a philosophy of life with sickle cell
- Higher vitamin A linked to better lung function in sickle cell anemia
- Attending graduate school with sickle cell disease requires balance
- New off-the-shelf gene editing may treat sickle cell without transplant