In the past, whenever I had a sickle cell crisis, I often felt like I’d made a mistake. It was my fault that I’d triggered the episode. Thoughts such as “Why did I do that?,” “I am so silly,” and “I never learn” would cycle through my mind. Each…
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.
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I recently had the first-ever MRI scan of my brain, not something I ever expected. Getting an MRI came up during one of my routine sickle cell disease checkups, appointments I usually have every six months. As the doctor reviewed my medical history, she noticed something important. Here…
I’ve often considered myself unlucky to carry the burden of sickle cell disease, which sometimes seems insurmountable. The journey can be isolating. I have aches and pains that nobody can see and emotions I’m still learning to process. In many situations, I’m constantly thinking about myself, particularly how to avoid…
Every year on my Twitter feed, I see a tweet about how important it is to know your genotype, as well as your partner’s. I agree with the rationale for this; it’s important to be as prepared as you can when dating. Understanding how genotypes work means you can…
The dating scene has shifted significantly in recent years. It’s common nowadays to meet people online through social media or dating apps. Virtual dating allows someone to create a profile that showcases their best qualities. It can include anything from favorite foods to most embarrassing moments. In building my profile,…
Several decisions I make regarding my health are weighed up and thought out on a finely balanced scale. A sickle cell crisis can happen at any moment, so doing what I can to avoid my triggers is always at the forefront of my mind. I’ll contemplate questions like,…
As someone with sickle cell disease, I’m very passionate about blood donations because this selfless act of kindness can change a person’s life, or even save it. Many donations go toward blood transfusions, a critical treatment for sickle cell patients. I can’t donate blood, so my advocacy efforts…
Advocating for the sickle cell disease community means drawing on my experiences to help communicate the issues its members are facing, and to attract, engage, and educate a general audience. But this takes a toll on me, as many of my memories are unpleasant and traumatic. Even so, I continue…
As a sickle cell advocate, a key skill I’ve had to learn is patience. I need patience to listen, to understand, and to let go of negativity. Early in my advocacy journey, I was speaking at an event, and an audience member shared their experience of having a family member…
A new year often means a fresh start, with new goals, habits, and challenges. For the past few years, to help me better focus, I’ve been writing a list of goals I want to achieve in each new year. Some of these goals build on things I already do, such…
As part of the U.K.’s National Health Service, it is common practice for sickle cell disease patients to have routine checkups with their hematologist. These routine checkups include collecting blood and urine samples, reviewing patients’ care plans, and making general health assessments. I have…
At this stage in life, I know my body pretty well. I’ve gotten better at avoiding my triggers, which means I have fewer sickle cell crises than I used to. For example, I try not to expose myself to cold weather, exhaustion, or stress, but that alone can be…
Once a sickle cell crisis surpasses my manageable pain threshold, it sadly becomes time for me to go to the hospital. Hospitalizations always fill me with despair and anxiety due to past experiences, so I reject the notion unless I’m facing dire circumstances. My past experiences have not been…
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