How I’m Adapting My Pain Scale to Keep Myself Accountable
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 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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My recent sickle cell pain crisis took me to a dark place
I recently had a severe sickle cell pain crisis that forced me to go to the hospital for stronger medication than what I had at home. For the record, it’s been three years…
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Reflecting on the Past Taught Me Lessons About Mental Health
The mind is a powerful tool. One phenomenon I’ve become aware of in the last year is speech impairment after a sickle cell crisis. It’s as though the volume of my voice has…
Social Media vs. Reality: Behind the Scenes With Sickle Cell Patients
I would love to go on one of the Bali swings I always see on social media and then capture the moment. However, my friend informed me that the reality is that…
I Don’t Want to Waste My Days Because of Sickle Cell Disease
The cooler and sometimes gloomier weather of autumn has begun to kick in here in London. However, I’m still daydreaming about the amazing summer I had. A few weeks ago, I was in a…
Imagining a Life Without Sickle Cell Reminds Me of My Accomplishments
Recently, while on a long journey, I rewatched one of my favorite movies, “Inception.” I find the concept of the film unique; in short, it’s about manipulating someone’s subconscious or dreams to…
Hiding My Sickle Cell Disease From Others Taught Me a Painful Lesson
Building relationships while having a chronic condition can be a daunting challenge. On the one hand, you want to be yourself and let people accept you for who you are. On the…
Learning to Let the Good Days Roll With Sickle Cell Disease
Having a condition like sickle cell disease can bring a lot of bad days. Crisis pain and extreme fatigue can be unbearable. Sometimes it feels like there are more bad days than good…
How to Create a Sickle Cell Crisis Care Plan: My Tips for Caregivers
In my last column, I provided some caregiving tips to help people support loved ones with sickle cell disease. One thing I suggested is having a crisis care plan in place, though…
Caregiving Tips to Support a Loved One With Sickle Cell Disease
I have written about learning to appreciate those who support me on my journey with sickle cell disease. My support network plays a pivotal role in advocating for me when I’m in…
As a Sickle Cell Patient, I Found Hope and Inspiration in a New Song
Disease representation is essential in all aspects of life. Over the years, I’ve noted a few mentions of sickle cell disease in mainstream media by celebrities. I’ll never forget hearing “…
My Support Network Has Sickle Cell, Too
Every day I make a thousand and one micro-decisions to manage my health with sickle cell disease and avoid having a vaso-occlusive crisis. Most of these decisions are automatic, subconscious actions based…
I Will Keep Fighting for Greater Awareness of Sickle Cell Disease
I have been a volunteer for a charity organization called Give Blood Spread Love for a couple years. We drop in on people at their work and other community establishments to raise awareness…
