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As caregivers, we often find ourselves riding a roller coaster of emotions, with each twist and turn bringing forth a new wave of feelings. Caring for a loved one with chronic illness can involve moments of joy and relief, as well as bouts of sadness and guilt. In my journey…

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,…

Sickle cell disease can be challenging to manage at any stage of life, but perhaps especially so for students with moderate to severe disease pursuing higher education. The stress of school can often trigger sickle cell crises, making it crucial for patients to prioritize their health when furthering…

One thing I enjoy doing in my life is mentoring young people with sickle cell disease. I decided to become a mentor a few years ago in order to share my experiences and help others avoid the same mistakes I made while managing the disease. Interacting with each…

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…

Sickle cell disease doesn’t only affect people physically; it can also result in social stigma, which occurs in schools, workplaces, healthcare settings, and even within families. At the core of sickle cell stigma lies the term “sickler.” While the word can be used simply to refer to people…

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…

Pain and anemia seem to be the loud hallmarks of sickle cell disease. Because many patients and caregivers prioritize addressing the challenges posed by these issues, they tend to overlook infections. But despite their quieter nature, infections pose a grave threat and stand as the leading cause…