Shaniqua’s Sickle Chronicles
— Mary Shaniqua

Here’s a feeling that I’m certain other sickle cell disease patients relate to, and who knows, perhaps their carers do, too: It’s astounding how much sickle cell can change the body over time. I know I say it often, but honestly, it feels like the disease has its own…

Sickle cell disease is highly misunderstood, and our patient community is acutely aware of this. One of the key lessons I’ve learned throughout my journey with this illness is the importance of a strong community. Fighting sickle cell each day and learning to navigate the world as a…

I recently had my first blood transfusion of the year. It’s one of the most common treatments for sickle cell disease. Two types of transfusions are used to treat sickle cell patients: top-up, or simple, in which healthy blood is delivered through a cannula, and exchange,…

Sickle cell disease is a constant, annoying “companion” in my life. My list of grievances about the illness is never-ending, but one of the things I find most daunting is the disease’s unpredictable nature. There’s almost no way to know when a sickle cell pain crisis will strike. Unfortunately,…

Living with sickle cell disease comes with a heavy cost. Much of your time is spent seeking to understand your body, how the condition impacts you as a person, and then adjusting your lifestyle to maximize this knowledge. This is a never-ending process because life takes you through seasons,…

One Saturday evening, I was sitting on the sofa with my husband watching a film. Suddenly, I felt a sharp, stabbing pain pierce through my chest. “Babe, call an ambulance,” I uttered just in time before falling to the ground and screaming in agony. A standard weekend had become something…

I’ve previously written about the difficulties I’ve sometimes faced when trying to get my prescriptions filled to treat sickle cell disease. In a stroke of luck about a year ago, I found a pharmacy that is much better suited for my needs. The staff at this particular pharmacy is…

The past few weeks have been extremely difficult — heartbreaking, even. Here in the U.K., I’ve seen two recent reports about sickle cell patients dying from negligence. Both of their deaths were preventable. As MyLondon reported in September, Dave Onawelo presented to the emergency department in December 2023 and…

Although approximately 1 in 6 people worldwide are living with a significant disability, the narrative that those of us with disabilities deserve less continues to be perpetuated. As a sickle cell disease patient, I know that stigma all too well. It suggests that I am worth less than…

An unfortunate reality is that life costs more when you are disabled. Why is this? Simply put, living with a disability often means that extra costs are required to gain access to mainstream society. Even in a country like the U.K., where I live and where healthcare is mostly free,…

Here in the U.K., October is Black History Month, and this year’s theme is “reclaiming narratives.” I believe that theme is particularly apt for sickle cell patients. People with sickle cell disease have been subjected to false narratives for far too long. We face stigmas everywhere…

When I’m running workshops for children with sickle cell disease who are transitioning into adult care, I always include a parent segment to teach them how to train their children to advocate for themselves. For patients living with sickle cell disease, including me, advocacy becomes an…