Two of the most commonly known symptoms of sickle cell disease are a vaso-occlusive crisis (perhaps the best-known symptom) and fatigue. But others aren’t so well-known; in fact, I’d say most people aren’t aware…
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Sickle cell disease is a constant, annoying “companion” in my life. My list of grievances about the illness is never-ending, but one of the things I find most daunting is the disease’s unpredictable…
Living with sickle cell disease comes with a heavy cost. Much of your time is spent seeking to understand your body, how the condition impacts you as a person, and then adjusting your…
One Saturday evening, I was sitting on the sofa with my husband watching a film. Suddenly, I felt a sharp, stabbing pain pierce through my chest. “Babe, call an ambulance,” I uttered just in…
I’ve previously written about the difficulties I’ve sometimes faced when trying to get my prescriptions filled to treat sickle cell disease. In a stroke of luck about a year ago, I found a…
The past few weeks have been extremely difficult — heartbreaking, even. Here in the U.K., I’ve seen two recent reports about sickle cell patients dying from negligence. Both of their deaths were preventable. As…
Although approximately 1 in 6 people worldwide are living with a significant disability, the narrative that those of us with disabilities deserve less continues to be perpetuated. As a sickle cell disease patient,…
An unfortunate reality is that life costs more when you are disabled. Why is this? Simply put, living with a disability often means that extra costs are required to gain access to mainstream society.
Here in the U.K., October is Black History Month, and this year’s theme is “reclaiming narratives.” I believe that theme is particularly apt for sickle cell patients. People with sickle cell…
When I’m running workshops for children with sickle cell disease who are transitioning into adult care, I always include a parent segment to teach them how to train their children to advocate…
I celebrated yet another birthday last week. I love birthdays. As someone living with sickle cell disease and the difficulties it brings, I’ve learned that life is fickle. Therefore, it’s important to be…
Every now and then, something happens that motivates me to educate others about how a particular action, policy, or system is oppressive to me, as a Black woman with sickle cell disease. It’s…
The sickle cell community needs unity if we are ever going to see change. A few weeks back, I came across someone trying to start a charity for sickle cell patients. Ordinarily, you…
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