Shaniqua’s Sickle Chronicles – a Column by Mary Shaniqua

Would you believe me if I told you that I was once hospitalized with a sickle cell crisis, and a reflexology foot massage is what caused the pain to subside? Probably not, right? I know it sounds rather strange. I’d been given all sorts of medications that were supposed…

Recently, for the first time I can remember, sickle cell disease has been in mainstream media quite a bit. Because much of the discourse has focused on treatments and curative therapies, I’ve been reflecting on what I can do to help drive progress in these areas. In…

Last week, I shared that I’m conflicted about joining clinical trials that test potential treatments for sickle cell disease. Although I don’t yet trust the healthcare system enough to participate, there are other ways I can make a difference. Medical progress may involve new treatments or even cures,…

A few weeks ago, I attended a sickle cell awareness event for pharmacists. I was simply there as an interested sickle cell disease patient; I don’t work in the pharmaceutical industry. One major topic of discussion was the lack of progress toward cures for sickle cell disease.

When you hear the word “accessibility,” what thought springs to mind? For me, accessibility is about making adjustments so people with individualized needs can experience a building, activity, document, or other part of life just as anyone else can. But as a disability rights advocate and a disabled person myself,…

I was recently invited to attend a pharmaceutical networking event that focused on sickle cell disease. The event was hosted by Black Pharma, a nonprofit organization that promotes greater representation of Black professionals across the pharmaceutical industry. It was co-organized by the Sickle Cell Society, a U.K.-based…

Sometimes when we patients talk about the stigmas associated with sickle cell disease, I don’t think people fully grasp what we mean. I’ve written about some of the negative connotations about sickle cell patients expressed by people in the healthcare sector and society in general. An overarching…

There is something that some people do that bothers me when I tell them for the first time that I have sickle cell disease. I’ll introduce sickle cell disease into the conversation, and they’ll respond by telling me that they knew someone who died from the disease. They usually…

For those who are unfamiliar with my previous columns, I often write about a recurring theme: the importance of preventive action in the management of sickle cell disease. I am a staunch advocate of identifying health risks and doing what I can to prevent them. I take my…

Last Friday was notable for two reasons: my most recent column was published, and I canceled a planned meeting with two friends at the last minute because of pain. That had me feeling quite deflated and annoyed because I’d made plans I couldn’t realize because of my…