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…
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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Communication is necessary for any relationship to form, whether it’s platonic or romantic. The more I experience different types of relationships, the more I realize how pivotal communication is in maintaining their health. One of the most challenging times for me to communicate is during a sickle cell disease…
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…
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 not apply to everyone. That said, I feel like a good…
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 that nothing is guaranteed in life. Nonetheless, I’m blessed to have…
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 same mistakes I made while managing the disease. Interacting with each…
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, he couldn’t donate at his last session because of low…
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