I’m a big advocate for giving myself time to recover after a sickle cell pain crisis. After my last crisis, however, I severely underestimated how long this process would take. It’s been two months now, and I’m finally able to return to everything I enjoy. I recognize myself again.
Sickle Sagas — Dunstan Nicol-Wilson
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.
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As the season shifts from winter to spring, I’ve found myself reflecting deeply on what this past winter has meant for me. Historically, winter has been the hardest part of my journey with sickle cell disease, marked by crisis flare-ups, increased pain, and a constant awareness of…
I recently had a severe sickle cell pain crisis that forced me to go to the hospital for stronger medication than what I had at home. For the record, it’s been three years since that happened. Up until that point, all of my crises had been manageable at home.
Living with sickle cell disease comes with challenges, such as pain crises that can set a patient back days, weeks, or even months. The mental and physical toll can be immense. Because February is often associated with love, I’ve been reflecting on how facing setbacks with sickle cell can…
I wanted to start new habits at the end of last year instead of at the beginning of 2025. Several sources told me I didn’t need to wait until the start of a new year to make changes, so, in typical push-myself fashion, I attended step aerobics classes. The first…
It’s almost winter again here in the U.K., and every year I’m shocked by the cold weather and its impact on my body. Winter has always been one of my greatest adversaries, and as the seasons shift, I’m reminded of how brutal this time of year can be for someone…
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. Kendric Cromer recently became the first sickle cell patient to complete…
Pfizer’s recent decision to withdraw Oxbryta (voxelotor) from global markets feels like a devastating blow for many people with sickle cell disease. Oxbryta’s conditional approval in 2019 by the U.S. Food and Drug Administration gave hope to many, as few treatments exist for patients with sickle…
For the sickle cell disease community, September is an important time for advocacy and raising awareness, because it’s National Sickle Cell Awareness Month. This year’s theme is “Sickle Cell Matters.” For me, the month isn’t only about raising awareness; it’s also about educating the public, advocating for…
Note: This column describes the author’s own experiences with fasting. Not everyone will have the same response to it. Consult your doctor before starting or stopping a fasting practice. Challenging myself has often been a double-edged sword. If I push too far, I end up with crisis pain…
Growing up in South London is a rare experience. There’s a plethora of rich and diverse African and Caribbean communities that have influenced the area’s culture. Word of mouth goes a long way, and sharing stories builds relationships and community. These stories often feature our lived experiences, including the injustices,…
Experiencing different cultures has made me appreciate how people interact with the world. I’ve been reflecting lately on how culture has influenced my actions, especially my advocacy for sickle cell patients. Both my parents are from Sierra Leone, and I was born and raised in London. Sierra Leoneans have…
This month is special for me. On June 14, I celebrated my third anniversary of writing this column for Sickle Cell Disease News, and June 19 will mark both World Sickle Cell Day and Juneteenth. The past three years have been quite a journey, and I’m…
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