Sickle Sagas — Dunstan Nicol-Wilson

February is often known as the month of love. That makes it an interesting time in the sickle cell community, as I often see differing viewpoints on how to approach dating with the disease. This week, I’ll be speaking on Instagram about love and sickle cell. To…

For Rare Disease Day on Feb. 28, I’ll be speaking to medical professionals about sickle cell disease and how they can better support our community. It’s a brilliant opportunity to influence future change and leave a lasting impression on healthcare professionals. In preparation, I have reflected on…

The beginning of this year has been difficult for me because I have felt unmotivated in my sickle cell disease advocacy. At the end of 2022, I didn’t set any concrete goals for the new year and wasn’t excited about what was to come. These feelings are far removed…

A few weeks ago, I spent a weekend with new family members, and it was the most action-packed weekend I’ve had in a while. I was exhausted by little people! I helped set up a 3-year-old’s birthday party. I was a pretend patient for the newest toddler doctors and at…

I recently began training to become a mentor to children with sickle cell disease. As part of the preparation, I’ve reflected on my teenage experiences with sickle cell. What was my mindset during that period? I was fearless and ignorant of my limitations. I thought I was invincible.

Winter has arrived here in the U.K., and the end of the year is fast approaching. During this period, it becomes difficult to avoid things that can trigger a sickle cell pain crisis, including cold weather, stress, exhaustion, and an unbalanced diet. While some things are in my…

In my quest to better manage sickle cell disease, I’ve been thinking recently about the concept of delayed gratification. This involves resisting the impulse to accept an immediate reward in the hope of obtaining something more valuable in the future. I’ve heard this term mentioned a lot in reference…

I can be a slow walker, which is controversial for someone who grew up in the city. The hustle and bustle of city life dictates that somebody, somewhere, is in a rush to get to where they need to be. It’s not that I’m incapable of walking faster, although sometimes…

My ultimate goal as a sickle cell advocate is for advocacy to no longer be necessary. I’m a private and introverted person and usually prefer to keep to myself. However, as an advocate, I must put myself out there and leave my comfort zone to share my journey with…

I’ve recently been asked a couple of times to share something random I’d like to do. I’ve responded that I want to play volleyball. I played the sport a few times in school and loved it, but never pursued it. Last year, I watched an anime show called “…

My main focus in managing sickle cell disease is preventing vaso-occlusive crises, the symptom I struggle with most. However, due to the seasonal change in weather, fatigue is another common sickle cell symptom that has been difficult for me in recent weeks. On a typical day, I…

Recently, I’ve been trying to recall what the pain from a sickle cell crisis is like. Not remembering must sound a little weird, since a crisis is my most prominent symptom of sickle cell disease. Even on good days, I should have a solid grasp of what…