Columns

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…

Sickle cell disease can manifest as both a visible and invisible illness, depending on the individual and their unique complications. For some, the symptoms are apparent, but for others, the disease remains largely hidden. Many sickle cell patients are prone to stigma and discrimination. When the disease is…

It’s almost winter again here in the U.K., and every year I’m shocked by the cold weather and its impact on my body. Winter has always been one of my greatest adversaries, and as the seasons shift, I’m reminded of how brutal this time of year can be for someone…

Caregiving is a journey I hold close to my heart, especially as it involves my dear cousin Ada, a vibrant adolescent and a true warrior living with sickle cell disease. Yet I must admit, this journey hasn’t been without its shadows. As a healthcare professional who has seen the…

Blood transfusions play a critical role in the management of sickle cell disease. They can help prevent and manage various complications as well as reduce disease severity. This lifesaving intervention has brought many sickle cell patients on the verge of death back to life — including me. Despite being…

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…

I recently wrote about my disappointment regarding Pfizer’s decision to withdraw Oxbryta (voxelotor) from global markets as a treatment option for sickle cell disease. Therefore, it seems only fitting that I also celebrate a milestone in gene therapy. Kendric Cromer recently became the first sickle cell patient to complete…

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…

Living with sickle cell disease is not a proverbial bed of roses; instead, it’s a journey of twists and turns. Yet I’m grateful for the experience. It’s imparted invaluable life lessons that have shaped me into the woman I am today, and that woman is a better human being.

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,…