Disease representation is essential in all aspects of life. Over the years, I’ve noted a few mentions of sickle cell disease in mainstream media by celebrities. I’ll never forget hearing “Hidden Pain” by A Star when it was released in 2019. It was the first time…
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.
First in a series. If you’ve read my recent columns, you’ll know I’ve been in a really good place with my health as someone with sickle cell disease. I credit a lot of that to the work I’ve been putting in at the gym to strengthen my body.

Every day I make a thousand and one micro-decisions to manage my health with sickle cell disease and avoid having a vaso-occlusive crisis. Most of these decisions are automatic, subconscious actions based on years of experience and learned behavior to prevent a crisis. For example, I’m always…
I have been a volunteer for a charity organization called Give Blood Spread Love for a couple years. We drop in on people at their work and other community establishments to raise awareness about sickle cell disease and blood donation. During these sessions, I speak about the different…
I strongly advocate for mental health and well-being because I have seen the personal benefits of it. By paying attention to these issues in my life, my overall mood has improved, I’ve become more confident, and I’ve been physically able to keep up with the demands of everyday life.
At the start of the year, I challenged myself to have zero sickle cell crises. I knew this goal was ambitious and something I’d never done as an adult, but I wanted to try. Putting it out there in the universe was my way of holding myself accountable.
As World Sickle Cell Day approaches on June 19, I’ve been thinking about my contribution to raising awareness about sickle cell disease. For those dealing with the condition, sickle cell awareness is more than just a day: It is every day. However, building consistency when you have…
I struggle with the fear of letting others down. For example, suppose someone scheduled a work meeting that is inconvenient for me. I’ll do anything to make sure I attend instead of suggesting an alternative. Of course, offering an alternative doesn’t mean no or that they won’t work with…
I work in the research and development field, an industry I didn’t know much about until I completed my first college degree. In this field, I’ve developed a vast understanding of how clinical trials work and why they are necessary to develop novel treatments for various illnesses and diseases.
Growing up in my African household, religion was a core element of my upbringing. As a family and community, we would thank God for all aspects of life and pray diligently for healing and blessings. But as a child, I struggled with this because I felt ungrateful, constantly asking…
I love playing adventure games, especially those in which your decisions affect the story’s outcome. For example, if you choose to steal, you’re a villain, and if you choose to share your possessions, you start down the path toward becoming a hero. The choices may be small in the grand…
Representation of different people in all areas of society is key to empowering the next generation. Having a role model that looks or talks like you validates your own experience. But as a Black man with a chronic condition, role models in my community were few and far between. For…
April is my birth month, and as my birthday approaches, I am deep in thought. My thoughts flash ahead, worrying about how close I am to old age. Similarly, I go backward in time, reflecting on my life and my saga so far, wondering where all the time went.
Recent Posts
- When a sickle cell pain crisis interrupts a stretch of good health, part 1
- Scientists discover how stressed red blood cells make hemoglobin
- How my sickle cell disease advocacy has evolved over time
- New study links sickle cell anemia to lower ovarian reserve in women
- $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