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…
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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Even when I’m perplexed, my community helps me feel validated
As I’ve grown older with sickle cell disease, I’ve come to appreciate the incredible community that’s emerged. This network connects us, amplifies our voices, and gives us a platform to share our experiences.
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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…
Sickle Cell Crisis Treatment Includes Caring for Mental Health, Well-being
I strongly advocate for mental health and well-being because I have seen the personal benefits of it. By paying attention to these issues in my life, my overall mood has improved, I’ve become…
Building Myself Up Yet Again After Another Sickle Cell Crisis
At the start of the year, I challenged myself to have zero sickle cell crises. I knew this goal was ambitious and something I’d never done as an adult, but I wanted…
One Year On: Raising Awareness by Documenting Life With Sickle Cell Disease
As World Sickle Cell Day approaches on June 19, I’ve been thinking about my contribution to raising awareness about sickle cell disease. For those dealing with the condition, sickle cell awareness…
Learning to Be Kinder to Myself With Sickle Cell Disease
I struggle with the fear of letting others down. For example, suppose someone scheduled a work meeting that is inconvenient for me. I’ll do anything to make sure I attend instead of suggesting…
In Defense of the Importance of Sickle Cell Clinical Trials
I work in the research and development field, an industry I didn’t know much about until I completed my first college degree. In this field, I’ve developed a vast understanding of how clinical…
