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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I work in the research and development field, an industry I didn’t know much about until I completed my first college degree. In this field, I’ve developed a vast understanding of how clinical trials work and why they…
Growing up in my African household, religion was a core element of my upbringing. As a family and community, we would thank God for all aspects of life and pray diligently for healing and blessings. But as a…
I love playing adventure games, especially those in which your decisions affect the story’s outcome. For example, if you choose to steal, you’re a villain, and if you choose to share your possessions, you start down the path toward…
Representation of different people in all areas of society is key to empowering the next generation. Having a role model that looks or talks like you validates your own experience. But as a Black man with a chronic condition,…
April is my birth month, and as my birthday approaches, I am deep in thought. My thoughts flash ahead, worrying about how close I am to old age. Similarly, I go backward in time, reflecting on my life and…
No one enjoys being hospitalized. I hate it when a sickle cell crisis forces me to call an ambulance. This is due to the severe pain I experience during a crisis and the fear that lingers from previous hospitalizations.
Last week, I was privileged to facilitate a discussion between two mothers who have children with sickle cell disease. I can only imagine how difficult it must be for a parent to see their child in pain from…
I’ve had the opportunity to work with some amazing people who have given me the space to grow and develop. These experiences have been invaluable, and as a manager, I’ve been sharing them with junior staff to help shape…
The constant pandemic lockdowns and quarantines in the past two years caused me to put on a considerable amount of what I call “quarantine weight.” My fitness levels dropped below my standard, which was low to begin…
In the past, whenever I had a sickle cell crisis, I often felt like I’d made a mistake. It was my fault that I’d triggered the episode. Thoughts such as “Why did I do that?,” “I am so…
I’ve often considered myself unlucky to carry the burden of sickle cell disease, which sometimes seems insurmountable. The journey can be isolating. I have aches and pains that nobody can see and emotions I’m still learning to process. In many…
Every year on my Twitter feed, I see a tweet about how important it is to know your genotype, as well as your partner’s. I agree with the rationale for this; it’s important to be as prepared as…
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