Sickle Sagas – a Column by Dunstan Nicol-Wilson

In honor of World Sickle Cell Day, held June 19, I would like to highlight some incredible U.K.-based organizations I’ve had the pleasure of working with recently. These groups are not only changing the narrative of what it means to live with sickle cell disease, but they’re also challenging…

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.

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…