Shaniqua’s Sickle Chronicles – a Column by Mary Shaniqua

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…

I’m extremely passionate about raising awareness of sickle cell disease. That probably comes as no surprise, considering I have the condition and write a patient column focused on precisely that! Still, I like to imagine how greater awareness could improve our patient care and quality of life. It’s…

I recently suffered a sickle cell crisis while on a trip to Jamaica, which was particularly difficult because my partner was also ill. I was in an unfamiliar location, and the pain was far worse than usual. But I was prepared, I thought. A few years ago, I…

Is there a worse feeling than when someone you love is unwell and you can’t help them? Because I have sickle cell disease, my immune system is compromised. This means I can catch illnesses easily. When I do get sick, it can be disastrous. A typical cold or flu…