How I build up my ‘credit’ during periods of good health
The past few months have brought me a stretch of good health. Because the cold can trigger a sickle cell crisis for me, I tend to have fewer issues during the…
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.
Featured Post
This World Sickle Cell Day, I’m grateful for UK advocacy groups
In honor of World Sickle Cell Day, held June 19, I would like to highlight some incredible U.K.-based organizations I’ve had the pleasure of working with recently. These groups are not only changing the…
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How 3 types of witnesses might handle seeing a pain crisis
The pain from a sickle cell crisis is difficult to describe. To explain, I’d compare it to getting your hand repeatedly slammed in a car door, with that pain searing every second throughout…
Taking a holistic approach to sickle cell disease management
As a teenager with sickle cell disease, I thought that one of my biggest challenges in life would be disease management. I worried about what my life would look like, how many…
My struggle to figure out how to help a caregiver
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…
2 years on: Raising awareness by documenting life with sickle cell
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…
A recent trip reminded me how unpredictable sickle cell can be
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…
How did I learn sickle cell disease management and other life skills?
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,…
The mental health challenges I face as a Black man with sickle cell
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…
Understanding how sickle cell disease has shaped my personality
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…
Preparing for a long, difficult journey with sickle cell disease
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…
We need more men to speak about living with sickle cell disease
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…
What to consider when developing a clinical trial for sickle cell patients
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…
