While I’ve been a sickle cell disease (SCD) advocate for more than two decades, I only seriously committed to this work after experiencing one of my worst complications: a case of avascular necrosis, which causes the death of blood tissue. It left me bedridden for…
The Sickle Cell Crusader — Oluwatosin Adesoye
Adesoye Oluwatosin is a practicing physician, a passionate and award-winning sickle cell advocate, and educator. She’s the founder of Sickle Cell Celebs, an online community for people living with sickle cell disease, and of Sicklelive Foundation, an NGO that caters to people living with sickle cell disease. She’s a Nigerian diagnosed with sickle cell anemia (HBSS) in 1987 when she was just 1 year old. She enjoys using her personal and medical experience to educate and create awareness about sickle cell disease and also help reduce health inequalities in its management. She’s called “The Sickle Cell Crusader.” Her column promises to be expository, educative, and compelling.
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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…
Several weeks ago, when news of the first sickle cell disease patient to be cured by gene therapy went viral online, I completely ignored it because I wasn’t interested. As a sickle cell advocate and educator, I was tagged repeatedly on these articles. Despite my initial reluctance to post…
In sickle cell disease, avascular necrosis (AVN) can occur due to the progressive impairment of blood supply to the bones caused by the sickling process. In AVN, the bone tissue dies and the bone collapses, as Johns Hopkins Medicine explains. The sickling process can also cause chronic anemia, blood…
As I look back on my two-year journey as a sickle cell disease columnist for Bionews, the parent company of this website, I’m struck by how much I’ve grown and evolved. In fact, I’m extremely proud. It all began in late 2022, when I stumbled upon a job posting…
Recently, I’ve been reflecting on how living with sickle cell disease has affected many of my dreams, goals, and lifestyle choices. Despite the changes, I have continued to dream and pursue my aspirations successfully. The impact of sickle cell disease intensified for me during…
A few weeks ago, I was in excruciating pain in the dead of the night. I’m not one to disturb others when I’m in pain unless it’s severe and I need help to manage it. This night was one of those exceptions, and I had to reluctantly wake up my…
Some of my childhood memories still linger. I vividly remember, for instance, the lonely nights spent in my bed while struggling with a painfully distended abdomen, a discomfort extreme enough to take away many nights of sleep. My bed was in the same room as my parents, yet I was…
Hydration plays a vital role in the management of sickle cell disease. It offers numerous benefits, including enhanced blood flow, and can help prevent or treat sickle cell crises and other disease complications. Sickle cell is a genetic disorder that alters the shape and structure of red blood cells.
Managing multiple sickle cell complications can be emotionally and physically overwhelming. Today I’d like to share an experience that still resonates deeply with me: my heartbreaking reaction to the diagnosis of one of those complications. Interestingly, it wasn’t the worst I’ve faced, but my reaction to it was undoubtedly…
With sickle cell disease, pain is often ever-present. Many people who have this disease experience various forms of pain throughout their lifetimes. Sometimes the pain is acute, other times it’s chronic, and still others it’s acute-on-chronic (when acute pain develops into chronic pain). Pain may be caused by various…
As last year drew to a close, a thought-provoking post in the Sickle Cell Celebs Facebook group inspired me to reflect on what I wish people understood about sickle cell disease. This introspection led me to come up with a long list that I’ve decided to share. There’s…
Sickle cell disease can manifest as both a visible and invisible illness, depending on the individual and their unique complications. For some, the symptoms are apparent, but for others, the disease remains largely hidden. Many sickle cell patients are prone to stigma and discrimination. When the disease is…
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