Mary is a 30-year-old London-based sickle cell patient using her experiences to build up others and raise awareness of what it’s like to live with a rare disease.
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, I know that stigma all too well. It suggests that I am worth less than…
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. Even in a country like the U.K., where I live and where healthcare is mostly free,…
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 disease have been subjected to false narratives for far too long. We face stigmas everywhere…
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 for themselves. For patients living with sickle cell disease, including me, advocacy becomes an…
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 grateful for every year and to celebrate the gift of life. A celebration doesn’t always have…
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 always a difficult conversation, but almost always necessary — in many cases for societal equity. This…
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 would think that as a sickle cell patient, I would find this heartwarming. But I had…
Last week, I shared news of my most recent hospital admission for sickle cell disease. One of the by-products of a sudden hospitalization is the interruption to my social life, family life, and work life. Because of ableism and discrimination, navigating the workplace as a disabled employee…
If you’re a regular reader of this column, you probably noticed I’ve been silent for a few weeks. Unfortunately, I had a sickle cell crisis and was hospitalized. The good news is that I’ve been discharged and am home, where I’m progressing toward full recovery. The other news…
I recently shared my thoughts here on why accepting the reality and implications of a sickle cell diagnosis is essential for both patients and their loved ones. One element of my support system is a virtual group of sickle cell patients. We all aim to share knowledge and…
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