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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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…
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…
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…
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…
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,…
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.
Many people have asked me how they can be a good friend to someone with sickle cell disease. I’m always willing to give advice, but I include the caveat that my suggestions are what I would appreciate. They may…
I celebrated my birthday last month, and I’m grateful to be 31 and see another year. I feel blessed — even though, in recent months, I’ve experienced loss within our sickle cell community. Each loss reminds me…
One thing I enjoy doing in my life is mentoring young people with sickle cell disease. I decided to become a mentor a few years ago in order to share my experiences and help others avoid the…
During a recent weekend, I was hanging out with my friends and catching up on life. One of my long-term guy friends mentioned he had become a blood donor and had been giving blood for several months. However,…
While sickle cell falls under the umbrella of rare disease, it doesn’t feel so rare among my circle of acquaintances. In my community, somebody always knows someone else with sickle cell disease and has a vague understanding of…
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