Over the past month, I’ve had caregivers, friends, and siblings of patients with sickle cell disease reach out to me with questions about how to better support their loved one. Each scenario I’ve read has reminded me how difficult it can be to support someone with a chronic condition.
Sickle Sagas
— Dunstan Nicol-Wilson
Dunstan Nicol-Wilson is a clinical project manager from South East London, United Kingdom. Dunstan has his master’s in public health with a global health focus. Dunstan was diagnosed with the “invisible disorder” sickle cell disease from birth in 1993. He hopes that his column will raise awareness for this disease, encourage others to share their stories, and showcase all the ups and downs of living with a rare condition. Dunstan loves anime, cooking, and Manchester United.
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Recently, I’ve been writing more scientific articles, and for some of that research, I’ve been going back through scientific papers and looking at their references. One name I came across was my former doctor, Swee Lay Thein. It made me stop and think about how much she influenced the…
Hello, June! This month is very significant in my life, with various celebrations and anniversaries. For one, I’ve spent two years writing almost weekly about my sickle cell disease journey on Sickle Cell Disease News! I was in awe that I lasted a couple of months and was…
While I realize it’s impossible to plan for every eventuality, I often think about what I could’ve done better or differently to prevent a sickle cell pain crisis. Like the random bumps in life’s journey, a crisis can happen despite my best plans. A month has passed since I…
For the past few days, I’ve been thinking about learned behavior. For example, why do I speak the way I do? Why do I respond to specific cues the way I do? Upon reflection, much of it stems from my environment, how I was raised, and with whom I interacted…
Smile, be polite, be eloquent, and watch your tone to ensure others feel comfortable. These are my thoughts during daily interactions. Unfortunately, because of the negative preconceptions about Black men, my day-to-day is centered around putting others at ease. I often have to code-switch or behave in a more…
Reserved, calm, and quiet are adjectives that have been used to describe me at some point, and I’d say they’re pretty accurate. I usually step out of my shell only when I’m around people I’m comfortable with or in a one-on-one situation. In group settings, I tend to be more…
An eight-hour flight, a three-hour boat ride, a six-hour bus ride, and then a two-hour hike up a mountain: This is the journey I would take if I decide to visit extended family in one of the more remote parts of Cameroon. It would be a challenging, long, and arduous…
Note: This column includes thoughts about suicide. Resources for help are listed at the end of the column. Recently, I was privileged to speak at the Smile of a King Foundation, which was formed in London to support the mental health of Black men. It honors Tashan King, a…
Research is essential for change. For example, researching different diets and exercise regimens has helped me learn how to better manage my sickle cell disease. I’m open to discovering new techniques because no one drug or treatment will work for everyone. I’m also keen to learn about…
For me, stress is one of the biggest triggers of sickle cell crises. As a child, it wasn’t easy to identify when or why I was stressed. Although I try to do this now as an adult, I tend to ignore stressors until it’s too late. Stress can come…
I’ve been reflecting on what it means to have an invisible condition. Sickle cell disease is often called an invisible illness because you can’t immediately see it and it’s poorly understood. Life would be easier if people could tell that I had sickle cell and not make assumptions…
As I write, a familiar chorus plays in the background, followed by the line, “Please swallow your pride.” Aside from the hook, I’ve never really listened to the lyrics of Bill Withers’ “Lean on Me,” but this line struck me. As someone with sickle cell disease, my stance…
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