Columns

Is sickle cell disease (SCD) a blessing or a curse? I came across this question on social media a few days ago. As I prepare to turn 40, my answer, shaped by four decades of living with SCD, is that, to me, it is neither. It has become part…

I believe one of the most important things you can do, either as a sickle cell disease caregiver or a person with the disease, is to learn what can trigger a vaso-occlusive pain crisis. It can be nearly anything, both internal or external. Two of the most common triggers…

Recently, I’ve been writing more scientific articles, and for some of that research, I’ve been going back through scientific papers and looking at their references. One name I came across was my former doctor, Swee Lay Thein. It made me stop and think about how much she influenced the…

Last week, every deep breath brought excruciating chest pain that felt as though my ribs were crashing into one another. The symptoms reminded me of acute chest syndrome, a serious sickle cell disease (SCD) complication I have rarely discussed on my platform. As I recovered, I found myself thinking…

As Sickle Cell Awareness Month winds down, it’s worth recognizing the vital role that employment can play in the long-term health and well-being of disabled people. Work provides far more than a salary. It offers independence, purpose, routine, social connection, and opportunities for growth. However, these benefits are only truly…

Lately, I’ve been thinking about how my experiences with sickle cell disease influence my decisions when I feel pain, such as how quickly I reach for medication. When I was younger, I might have waited until my pain reached a 7 or 8 on the pain scale before doing…

My first two children, Tyson and Jordyn, were born in 2013 and 2015, respectively, with sickle cell disease type HbSS. Tyson was diagnosed about a week after birth. The doctors called me and told me I needed to bring him in for his first hematology appointment. After that…

When I joined Bionews, the publisher of this website, in 2023 as a freelance sickle cell disease (SCD) columnist, I experienced something that stayed with me. As someone living with a rare disease, I wasn’t the only person like me in the workplace. Several colleagues also lived with chronic…

When I was younger, I hated taking medication. It didn’t sit well with me that I had to take it for something I never asked for. Having to do it every day was particularly difficult, and when it came to managing pain, the size of some of the tablets and…

Hospital admissions can feel overwhelming when you live with sickle cell disease (SCD), regardless of where you receive care. Here in Nigeria, the experience can differ from what someone might see in the United States, but the emotional weight of an admission can feel remarkably similar. Research commonly identifies…