Having a child with sickle cell disease can prompt many emotions for parents, particularly guilt. In this column, I’ll discuss some of the factors that contribute to this type of guilt and provide guidance on how to cope with it. In my many years of living with sickle…
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…
Sickle cell disease, as most of you readers know, is a group of genetic blood disorders characterized by chronic anemia, acute and chronic pain, organ damage, and a possibly reduced life expectancy. But despite the virulence of this disease, it’s highly under-researched. A significant knowledge gap exists between…
Caregivers for people living with sickle cell disease provide physical, emotional, and sometimes financial support. They can be parents, siblings, spouses, friends, children, and extended family. I think healthcare professionals can be caregivers, as well. Their role is crucial to the overall health of anyone with sickle cell.
Jaundice is one of the most prevalent manifestations of sickle cell disease. Caused by an excess production of the compound bilirubin, jaundice results in a yellowish discoloration of the skin, mucus membranes, and the white part of the eyes, which is called the sclera. In this column,…
Second in a series. Read part one. Living with sickle cell disease presents a unique set of challenges. Unfortunately, some health professionals exacerbate these difficulties with insensitive and uninformed remarks. In my last column, I discussed some hurtful and unnecessary comments…
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 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,…
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