I Want to Get Better at Predicting a Sickle Cell Crisis
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…
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.
Featured Post
Celebrating a milestone in gene therapy for sickle cell disease
I recently wrote about my disappointment regarding Pfizer’s decision to withdraw Oxbryta (voxelotor) from global markets as a treatment option for sickle cell disease. Therefore, it seems only fitting that I also celebrate a milestone in gene therapy.
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Does Living With Sickle Cell Get Any Easier?
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…
Redefining Masculinity’s Core Traits With Sickle Cell Disease
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…
Telling My Employer About Sickle Cell Disease Was the Right Decision
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,…
One Small Step in the Fight Against Sickle Cell Disease
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…
We Must End the Stigma of Pain Medication for Sickle Cell Crises
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…
‘Go Beyond, Plus Ultra!’: Surpassing the Limits of a Diagnosis
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…
Becoming a Master Sickle Cell Patient
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…
Navigating College With Sickle Cell
September always reminds me of preparing for a new school year. It’s been a while since I’ve had to do that, so I have long since fallen out of the habit. However, I have not forgotten the feeling of…
My Hopes for the Future of Sickle Cell
As August draws to a close, so does the end of summer. September brings a new season and a fresh start. It is also Sickle Cell Awareness Month — a time to get involved and spread knowledge about…
When I Feel a Sickle Cell Crisis Happening, I Follow These 5 Steps
The word “crisis” is probably the most accurate term for what happens when pain kicks in from sickle cell disease. The dictionary definition of a crisis is “a time of intense difficulty or danger,” and that’s exactly what happens…
From Now On, Sickle Cell Isn’t Just About Me
I have often overlooked the song “From Now On” from the movie “The Greatest Showman,” because “This Is Me” has to be the best song on the soundtrack, right? In the movie, protagonist P. T. Barnum,…
