How health complications led me to become ‘the Sickle Cell Crusader’

“I have sickle cell disease. So what?” That was my reaction as an 11-year-old girl about 24 hours after I learned I had sickle cell disease.

Even though I had the disease, I was still the best student in my class and had a lovely family. Apart from my yellowish eyes, constant fatigue, and occasional sickle cell pain, my life was perfect in my eyes. I was content, so I chose not to see the imperfections.

However, in my late teens, my supposedly perfect life was turned on its head. Various sickle cell-related complications suddenly bombarded me from all directions. This continued for years, even as I attended medical school.

Fast forward to 2018, when I was by then a practicing physician. I woke up one day and could no longer stand because my knees were in excruciating pain. In my 32 years, I’d experienced different types of crisis pain, but never in that part of my body.

When I tried to stand, it felt like a truck was repeatedly rolling over my knees. The episode initially seemed like a joke or a nightmare, but it soon became my reality. After experiencing some bone complications in medical school, my biggest fear had been being unable to walk, and boom! It happened.

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Sometimes sickle cell crises come with warnings, but not this time. The complication arrived like a thief in the night. The pain in my knees was like nothing I’d ever experienced; even trying to move in a wheelchair was unbearable. I learned I had avascular necrosis (bone death due to impaired blood supply) in my knees, which had suddenly progressed two stages and was causing bilateral subchondral fractures.

I was bedridden for more than a year, despite all medical interventions. The complication changed the course of my life and redefined my purpose. Surviving and coping with that enormous challenge made me proud.

The experience also made me more curious about sickle cell disease and the people affected by it. Despite being a doctor with a good knowledge of the condition, I knew I needed to learn more. Many questions ran through my mind, such as these: How many sickle cell warriors are facing similar complications? Can they maintain their happiness through trying times as I did?

At this point, I developed a new passion and purpose: I needed to help other warriors in similar situations. I read countless scholarly articles, research, and books about sickle cell. Knowledge is power, right? Besides, I was still living in my room and couldn’t go anywhere.

Day by day, my desire to achieve this goal grew stronger. I wanted to start a fun, educational, and nonjudgmental group with no stigmas — a support group to reduce the negative psychosocial effects this disease can have on warriors. I wanted to help improve our quality of life.

I was also itching to teach the world more about sickle cell disease. I’ve seen a lot of areas where we get it wrong as warriors, caregivers, and healthcare professionals. I wanted to make a positive change in the sickle cell community.

One afternoon, on my bed, it came to me: I could use social media to achieve my goals! That day I started a Facebook group for people living with sickle cell disease. I later began a personal page for sickle cell advocacy and education, then founded a nongovernmental organization (NGO) for sickle cell warriors.

Over the years, it’s been highly satisfactory to achieve and be rewarded for the dreams I conceived on my sick bed. This has inspired me to set even bigger goals. I’ve successfully transformed my pain into gain and become a sickle cell crusader.

I’d love to introduce myself finally. I’m Oluwatosin Adesoye, but people call me Dr. Tee. I’m a medical doctor, a passionate and award-winning sickle cell advocate, a writer, and an educator. I’m 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 sickle cell warriors. I look forward to sharing my expository, educational, and compelling story here as a columnist for Sickle Cell Disease News. Enjoy!

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.