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 – a Column by Dunstan Nicol-Wilson
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…
Recent Posts
- Agios to seek accelerated approval in US of oral mitapivat for SCD
- Japanese agency awards $32M to advance sickle cell treatment to trials
- Intentional lifestyle changes got me through winter without a crisis
- Chicago nurses lead charge to speed up SCD emergency care: Study
- Recognizing the warning signs and symptoms of a sickle cell crisis
- US senators seek 5 more years of federal funding for stem cell program
- Adults with SCD face high risk of stroke in their 30s and 40s, study finds
- Sickle cell doctors face higher burnout than other specialists: Study
- Disease burden heavy for SCD patients in US, despite promise of gene therapy
- The conversation we avoid: Telling children they have sickle cell disease