The Sickle Cell Crusader - a Column by Oluwatosin Adesoye

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…

Note: This column discusses suicidal ideation. Resources for help are listed at the end of the column. Growing up, I was a happy-go-lucky child. I was always in a good mood and rarely cried. I believed depression would never find me until sickle cell disease said, “Hold my beer.” Depression…

In my 39 years with sickle cell disease, pain has been an uninvited and frequent guest and my most prominent symptom. Sickle cell crises are acute episodes of pain caused by the sickling of red blood cells, which impairs blood flow throughout the body. While I’ve had countless painful episodes…

The challenges of living with a physical disability in a society that is not inclusive can be overwhelming. Sickle cell disease causes both visible and invisible disabilities, and as someone who experiences both, I have faced countless difficulties. I have discussed the struggles of living with invisible disabilities, but…