Sickle Sagas – a Column by Dunstan Nicol-Wilson

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 becoming a hero. The choices may be small in the grand…

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, role models in my community were few and far between. For…

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 my saga so far, wondering where all the time went.

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. Additionally, every time I’ve been hospitalized by the National…

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 an invisible illness, a source of constant worry. The mothers’ perspectives…

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 their own journeys. In doing so, I’ve reflected a lot on…

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 with. Then, last year, I was diagnosed with avascular necrosis,…

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 silly,” and “I never learn” would cycle through my mind. Each…

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 situations, I’m constantly thinking about myself, particularly how to avoid…

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 you can when dating. Understanding how genotypes work means you can…