Shaniqua’s Sickle Chronicles
— Mary Shaniqua

Note: This column describes the author’s own experiences with an array of treatments. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Ordinarily, like many other people living with sickle cell disease, I take daily medications to help manage my…

Years ago, I mistook a pulmonary embolism for what I thought was a minor sickle cell disease vaso-occlusive pain crisis, a mistake that could easily have proved fatal. I promised myself afterward that I would never trivialize my symptoms again. As it turns out, that’s easier said than done.

If you’re like me and have a good medical team, over time, you’ve likely grown attached to them. When you’re fortunate enough to have a competent and consistent team that genuinely cares about your health, those types of relationships matter in ways that go beyond doctor appointments. That type of…

It has been quite some time since I was last here. For that, I owe you an apology. The silence, though sudden, was necessary. The past few months have been among the most difficult of my life, and navigating them while living with sickle cell disease has been,…

Living with sickle cell disease requires more of a patient than just managing symptoms. One major necessity is the ability to effectively communicate one’s needs. Self-advocacy is a lifelong skill that enables people with the disease to effectively navigate healthcare systems, educational settings, workplaces, and personal relationships. When nurtured…

As part of my advocacy, I frequently deliver keynote speeches and participate in panel discussions, and I’m often asked a particular question: “Is sickle cell disease a disability?” My answer is always the same. Here in the U.K., where I live, the Equality Act 2010 defines disability as…

Today, I woke up with a severe headache — again! It’s been four long, exhausting weeks of feeling like someone has set up camp behind my eyes with a hammer. The ache pulses before I’m even fully conscious, as if sickle cell disease is trying to remind me who’s…

I learned almost by accident that last week was Invisible Disabilities Week. I had no idea such a week even existed, which says something about the invisibility of disabilities in our society. The fact that something so significant can come and go with so little awareness speaks volumes about…

As the calendar fills up with weddings, birthdays, end-of-year events, and long-overdue catch-ups, it’s natural to feel excited. For those of us living with sickle cell disease, a second feeling often creeps in: anxiety. I have worried about how I will manage the fatigue. What do I do if…

When you live with sickle cell disease, the chance of a hospital admission is always one crisis away. Pain can escalate quickly, infections can creep up without warning, and what starts as a niggle can spiral into something that takes you out of your daily life for weeks.

As September comes to a close, so does Sickle Cell Awareness Month, an annual time dedicated to highlighting the realities, challenges, and resilience of people living with sickle cell disease. While the fight for awareness and equity continues daily, I’m cautiously optimistic that something is shifting. This year, I…