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…
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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One of my most important takeaways from therapy is the idea of building a body of evidence — proof that things can go well, and that my fears don’t always predict my reality. This applies to many areas of my life, but most recently to my relationship with cold weather,…
Traveling is one of my greatest passions. I enjoy seeing new things and immersing myself in different cultures, especially through local cuisines. Living with sickle cell disease means I have to take extra precautions when traveling, especially amid the COVID-19 pandemic. Unfortunately, my trips don’t always go as…
The results of a government inquiry tasked with investigating the failures of sickle cell care in the U.K., published in a report titled “No One’s Listening,” reveal evidence of substandard care, inadequate training of healthcare professionals, and attitudes that were underpinned by racism. Since these findings were released, there…
As an adult, I’ve been privileged to have a small community of sickle cell patients that I can connect and share experiences with. As winter approaches here in the U.K., I’ve noticed on social media that many sickle cell patients are in the hospital. I empathize with them, because it…
In the animated TV series, “One Piece,” a skill called Kenbunshoku Haki lets its users glimpse into the future, allowing them to dodge bullets and punches, and in some instances, even evade death. I think that would be a great power to have…
I was recently on a panel with fellow Sickle Cell Disease News columnist Tito Oye and other sickle cell patients, as part of a sickle cell-focused episode for the YouTube channel Make It Common. It was an amazing experience to participate in this panel and discuss our health…
My therapist asked me, “What does it mean to you to be a ‘masculine man,’ and how does having sickle cell disease impact that meaning?” It’s a question I hadn’t fully considered before, but about the same time I came across a podcast titled, “Unlearn Everything,”…
I didn’t reveal that I had sickle cell disease when I started my first job here in the U.K. As a new college graduate, and with the odds stacked against me because I had no previous work experience, I didn’t want my health condition to also affect my employment…
The treatment Adakveo (crizanlizumab) has been made available in the U.K. as the first new therapy for sickle cell disease in over two decades. The aim of Adakveo, which will be available to patients 16 and older in England and Wales, is to reduce the number of sickle…
The pain from a sickle cell crisis is one of the most devastating things I have felt. It is unpredictable and can eat away at you physically, spiritually, and mentally. The normal response to severe pain is to cure it or ease it, which usually involves taking some type…
I was recently diagnosed with avascular necrosis (AVN) in my knees. When the doctor called to tell me, I expected to be OK with it. I had read fellow Sickle Cell Disease News columnist Tito Oye’s column about AVN, felt similar symptoms, and conducted further research. I tend…
I often underestimate how much I have learned about sickle cell over the years. To live with a chronic condition, one must understand all the symptoms and side effects that come with it. However, these lessons aren’t freely given — there isn’t a handbook for living with sickle cell. I…
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