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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The dating scene has shifted significantly in recent years. It’s common nowadays to meet people online through social media or dating apps. Virtual dating allows someone to create a profile that showcases their best qualities. It can include anything…
Several decisions I make regarding my health are weighed up and thought out on a finely balanced scale. A sickle cell crisis can happen at any moment, so doing what I can to avoid my triggers is…
As someone with sickle cell disease, I’m very passionate about blood donations because this selfless act of kindness can change a person’s life, or even save it. Many donations go toward blood transfusions, a critical treatment for sickle…
Advocating for the sickle cell disease community means drawing on my experiences to help communicate the issues its members are facing, and to attract, engage, and educate a general audience. But this takes a toll on me, as many…
As a sickle cell advocate, a key skill I’ve had to learn is patience. I need patience to listen, to understand, and to let go of negativity. Early in my advocacy journey, I was speaking at an event, and…
A new year often means a fresh start, with new goals, habits, and challenges. For the past few years, to help me better focus, I’ve been writing a list of goals I want to achieve in each new year.
As part of the U.K.’s National Health Service, it is common practice for sickle cell disease patients to have routine checkups with their hematologist. These routine checkups include collecting blood and urine samples, reviewing patients’ …
At this stage in life, I know my body pretty well. I’ve gotten better at avoiding my triggers, which means I have fewer sickle cell crises than I used to. For example, I try not to expose myself…
Once a sickle cell crisis surpasses my manageable pain threshold, it sadly becomes time for me to go to the hospital. Hospitalizations always fill me with despair and anxiety due to past experiences, so I reject the notion…
Traveling is one of my greatest passions. I enjoy seeing new things and immersing myself in different cultures, especially through local cuisines. Living with sickle cell disease means I have to take extra precautions when traveling, especially amid the…
The results of a government inquiry tasked with investigating the failures of sickle cell care in the U.K., published in a report titled “No One’s Listening,” reveal evidence of substandard care, inadequate training of healthcare professionals, and attitudes…
As an adult, I’ve been privileged to have a small community of sickle cell patients that I can connect and share experiences with. As winter approaches here in the U.K., I’ve noticed on social media that many sickle cell…
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