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.
I recently wrote about my disappointment regarding Pfizer’s decision to withdraw Oxbryta (voxelotor) from global markets as a treatment option for sickle cell disease. Therefore, it seems only fitting that I also celebrate a milestone in gene therapy.
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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…
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…
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…
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…
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…
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…
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…
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…
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…
February is often known as the month of love. That makes it an interesting time in the sickle cell community, as I often see differing viewpoints on how to approach dating with the disease. This week, I’ll be…
For Rare Disease Day on Feb. 28, I’ll be speaking to medical professionals about sickle cell disease and how they can better support our community. It’s a brilliant opportunity to influence future change and leave a…
The beginning of this year has been difficult for me because I have felt unmotivated in my sickle cell disease advocacy. At the end of 2022, I didn’t set any concrete goals for the new year and wasn’t…
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