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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A few weeks ago, I spent a weekend with new family members, and it was the most action-packed weekend I’ve had in a while. I was exhausted by little people! I helped set up a 3-year-old’s birthday party. I…
I recently began training to become a mentor to children with sickle cell disease. As part of the preparation, I’ve reflected on my teenage experiences with sickle cell. What was my mindset during that period? I was fearless…
Winter has arrived here in the U.K., and the end of the year is fast approaching. During this period, it becomes difficult to avoid things that can trigger a sickle cell pain crisis, including cold weather, stress,…
In my quest to better manage sickle cell disease, I’ve been thinking recently about the concept of delayed gratification. This involves resisting the impulse to accept an immediate reward in the hope of obtaining something more valuable in…
I can be a slow walker, which is controversial for someone who grew up in the city. The hustle and bustle of city life dictates that somebody, somewhere, is in a rush to get to where they need to…
My ultimate goal as a sickle cell advocate is for advocacy to no longer be necessary. I’m a private and introverted person and usually prefer to keep to myself. However, as an advocate, I must put myself out…
I’ve recently been asked a couple of times to share something random I’d like to do. I’ve responded that I want to play volleyball. I played the sport a few times in school and loved it, but never pursued…
My main focus in managing sickle cell disease is preventing vaso-occlusive crises, the symptom I struggle with most. However, due to the seasonal change in weather, fatigue is another common sickle cell symptom that has been…
Recently, I’ve been trying to recall what the pain from a sickle cell crisis is like. Not remembering must sound a little weird, since a crisis is my most prominent symptom of sickle cell disease. Even on…
The mind is a powerful tool. One phenomenon I’ve become aware of in the last year is speech impairment after a sickle cell crisis. It’s as though the volume of my voice has been turned down and no…
I would love to go on one of the Bali swings I always see on social media and then capture the moment. However, my friend informed me that the reality is that there are long queues and…
The cooler and sometimes gloomier weather of autumn has begun to kick in here in London. However, I’m still daydreaming about the amazing summer I had. A few weeks ago, I was in a villa in Cyprus with most…
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