First in a series. Living with sickle cell disease can be incredibly challenging, especially when healthcare professionals make inappropriate and hurtful remarks. These comments contribute to poor pain management and health outcomes, and perpetuate stigma and discrimination against sickle cell patients. As a physician and…
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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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…
The nature of sickle cell pain crises is often misunderstood due to inadequate knowledge and research. This limited understanding extends even to healthcare professionals. It’s crucial to recognize that many common assumptions about crises — including their onset, duration, location, character, severity, and ending — are inaccurate. Drawing from…
Joining sickle cell support groups has proven invaluable for me in navigating the challenges of living with the disease. The benefits I’ve gotten from these groups have far outweighed the drawbacks I’ve encountered. In 2018, I joined several support groups while struggling with avascular necrosis, which left…
Living with sickle cell disease in Nigeria, where I’m from, often entails hiding one’s condition because of societal stigma. However, I’ve chosen to defy this norm and speak openly about my sickle cell challenges. When I was 11, my parents disclosed my health condition to me. At the…
Numerous myths about sickle cell disease persist globally, leading to negative attitudes toward patients. As a result, many people with sickle cell conceal their diagnosis and are reluctant to seek medical care and treatment to avoid facing stigma and discrimination. Their physical and mental health may also…
Second in a series. Read part one. In my last column, I outlined several “red flags” that people with sickle cell disease should be wary of when dating. These include partners who lack a mind of their own, exhibit violent behavior, believe they’re doing someone a favor by…
First in a series. Love and relationships can significantly affect the lives of people with sickle cell disease. A good relationship can contribute to improved mental and physical health, while a bad relationship may lead to the opposite. Unfortunately, finding love can be challenging for people with sickle cell,…
In 2006, the World Health Organization recognized sickle cell disease as a global public health problem. Sickle cell is not just a genetic blood condition, but a multisystem disease that can damage organs and shorten life spans. Moderate or severe forms can be especially virulent. While some…
It took me a while to realize that intense emotions can lead me to a sickle cell crisis. Most of my health professionals never mentioned it when educating me about crisis triggers. From what I’ve learned as a physician, emotional triggers aren’t researched or documented enough. Hence, the…
Chronic diseases and pain can sometimes take away one’s happiness. They are proven predisposing factors for depression. In my case, sickle cell disease has been challenging. Living with frequent acute pain episodes, chronic pain, and numerous sickle cell complications can easily snuff out your happiness, especially…
I often hear a fascinating question among those living with sickle cell disease, sickle cell advocates, parents, caregivers, etc. — “Can sickle cell disease affect our goals and career choices?” — and I usually find some of the answers as interesting as the question. I’ve heard answers like,…
From my experience, pain is one of the hallmark symptoms of sickle cell disease. In fact, it is its trademark. Unsurprisingly, the translation of sickle cell disease in my Yoruba language is “aro’moleegun,” which denotes “bone pain.” If you have moderate to severe sickle cell disease, pain is…
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