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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It’s the season for new beginnings and expanding on our past successes. I’m grateful to see another year; it’s a blessing and a privilege. In remembrance of those who didn’t make it into the new year, it’s essential…
Mentoring young people with sickle cell disease has been an enriching endeavor. I’ve learned and shared a lot about how the disease affects people differently. As a result of these differences, I must figure out how…
I’m constantly going through physical, spiritual, and mental growth. Removing or changing learned behavior and patterns, for example, has allowed me to become a better version of myself. However, I’ve been walking with limits on my body for…
I have been on a journey since 2018 to share my experiences with sickle cell disease and help others avoid some of the mistakes I’ve made along the way. This journey has exposed me to many different…
I took a break recently and rewatched some of my favorite anime and cartoons. There’s a popular idea in these types of media called a “canon event,” which is like a “what if” concept. The idea is that…
For a long time, I’ve been against the notion of being called a sickle cell warrior. I didn’t feel I deserved the title. A warrior, to me, is a skilled combatant who’s spent years developing a craft, like…
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 summer. I’ve also been taking…
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 the event. Suffering through one…
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 medications I would have to…
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…
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…
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…
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