I have always been a passionate advocate for sickle cell disease prevention, sometimes even prioritizing it over advocating for a cure. I envision a world where no child has to suffer the complications and pain of the disease, although realistically, I don’t see that happening yet. Most of the…
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…
How quickly time flies! I can hardly believe I’ve nearly completed another trip around the sun. It feels like only yesterday I was penning my thoughts for my 38th birthday column. I’m overwhelmed with gratitude that the warrior in me continues to prevail. I’ve survived another year, working toward…
Having a big or protruding abdomen is a common habitus or symptom of sickle cell disease. It’s something I’ve dealt with personally throughout my life and I understand how it can impact not only our physical appearance, but affect us psychologically and emotionally too. I have always…
Over the years, I’ve used my voice as a sickle cell disease warrior, advocate, and health professional to point out the shortcomings of the government, the public, and the healthcare system when it comes to the worsening of sickle cell morbidity and mortality. But today, I need to turn…
The past month has been incredibly difficult for me. I lost two close sickle cell warriors in a short time, which has been both heartbreaking and shocking. One of the hardest parts of running a sickle cell support group is experiencing this kind of…
Dating and relationships can be complicated for anyone, but for those living with sickle cell disease, they present even greater challenges. My experience — and that of many other sickle cell warriors I know — has shown me how vital it is to be with a partner who understands…
Whenever I’m asked to list the symptoms of sickle cell disease (SCD), I am always confused about where to begin. The condition is fundamentally a blood disorder, and every organ needs a steady supply of blood to survive. As a result, SCD can affect virtually any part of the…
As a medical professional living with sickle cell anemia, I’ve chosen to dedicate myself to sickle cell advocacy and education. On this journey, I’ve realized a lot of people cannot distinguish between sickle cell disease and sickle cell anemia, including some health professionals. Today I’m using my platform to…
World Sickle Cell Day took place on June 19, and one of my experiences that day prompted me to write about what it means to me. That day, I saw an ongoing debate by sickle cell warriors regarding the significance of the day and wanted to weigh in. On one…
Sickle cell disease (SCD) is a dynamic condition that affects people differently. Its symptoms and complications are evident in some patients from childhood, while in others, it may be silent or asymptomatic. There is a common misconception that every child who lacks obvious symptoms or has an “asymptomatic”…
Malaria remains one of the most common triggers of sickle cell crises in patients living in malaria-endemic regions, while sickle cell disease (SCD) also predisposes patients to frequent malaria infection. As a result, malaria prevention has become one of the mainstays of SCD management in these areas. Malaria…
Sickle cell habitus, the distinct physical features of some people with sickle cell disease, are typically associated with patients who have more severe forms of the disease, such as sickle cell anemia. But the severity of sickle cell disease can vary greatly from one patient to another because of…
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