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…
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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…
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…
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…
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…
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…
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…
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…
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…
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…
I recently shared my journey to accept my diagnosis of sickle cell disease. When people are told they have an illness, it not only affects them, but those around them as well. It’s therefore not just patients who…
My last column about my medication compliance triggered an interesting conversation with my sister. I’d written about what I did to reach 100% compliance, which is great and necessary for someone who, like me, has sickle cell…
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