One of the most challenging things about living with sickle cell disease is that, despite the planning, preparation, and precautions we patients take, a crisis or a pain episode can still unexpectedly happen. Sometimes, even when we do everything right to look after ourselves, our bodies remind us that…
Sickle Sagas – a Column by Dunstan Nicol-Wilson
Recently, I’ve been writing more scientific articles, and for some of that research, I’ve been going back through scientific papers and looking at their references. One name I came across was my former doctor, Swee Lay Thein. It made me stop and think about how much she influenced the…
Lately, I’ve been thinking about how my experiences with sickle cell disease influence my decisions when I feel pain, such as how quickly I reach for medication. When I was younger, I might have waited until my pain reached a 7 or 8 on the pain scale before doing…
When I was younger, I hated taking medication. It didn’t sit well with me that I had to take it for something I never asked for. Having to do it every day was particularly difficult, and when it came to managing pain, the size of some of the tablets and…
If you’ve read my columns, you know how much I praise and appreciate my support system. Everyone close to me knows I have sickle cell disease, so I rarely have to explain it or worry that they’ll panic about my health. They see me regularly, and I’ve learned to…
Recently, I’ve been struggling with a departure from my normal routine. I’ve written about how exercise and good nutrition have helped me manage my sickle cell disease, but I’ve been traveling a lot and have found myself thrown off balance in ways I didn’t anticipate. At first, I blamed…
One of the hardest things about growing up with sickle cell disease wasn’t the pain. It was the limitations — not just those imposed by the condition itself, but also from other people’s expectations. Like many patients, I grew up hearing what I couldn’t do. The conversations weren’t always…
Five years ago, I wasn’t sure I could do this. I remember staring at a blank screen and wondering whether I had anything worth saying. I knew what it felt like to live with sickle cell disease — the pain, the hospital admissions, the exhaustion, the grief. But writing…
Last in a series. Read part one. As the sickle cell pain crisis crashed through my body, I started gathering everything I needed before eventually becoming bedbound: water, medication, a heating pad, food. In doing so, I realized I’d become a bit complacent. Because I’d been in such…
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.
Recent Posts
- FDA delays decision on potential treatment for sickle cell
- Listening to my body when sickle cell disease has other plans
- Living with sickle cell has taught us how to make really good lemonade
- Assessing risk and being prepared ahead of traveling by air with sickle cell
- New sickle cell gene therapy shows promise in early mouse study