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…
Sickle Sagas – a Column by Dunstan Nicol-Wilson
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…
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 what it is. In the broader community, however, much less is…
Recent Posts
- $3M Breakthrough Prize honors duo whose work changed SCD treatment
- Etavopivat Phase 3 results support potential approval in sickle cell disease
- New diagnoses result in new grief and a new relationship with my body
- Study finds lower treatment use among SCD patients in sub-Saharan Africa
- Outside, looking in: The silent isolation of living with sickle cell disease
- Bias in sickle cell care may be tied to opioid stigma, new study finds
- How I advocate for my health needs while traveling for work
- Brain development changes seen in children with sickle cell anemia
- Beam to seek OK of gene-edited cell therapy risto-cel for sickle cell disease
- Agios to seek accelerated approval in US of oral mitapivat for SCD