Columns

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,…

Note: This column describes the author’s own experiences with various medications, including nonsteroidal anti-inflammatory drugs and oral opioids. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping any therapy. Sickle cell disease involves recurring episodes of pain, which can be acute…

Caring for my young cousin Ada, who battles sickle cell disease, has taught me so much about the ways in which chronic pain can wear down even the strongest of spirits. Each pain crisis feels like a wave crashing over her, relentless and unforgiving. With every failed attempt…

As I prepare to celebrate my 38th birthday on Oct. 18, I find myself lost in thought, reflecting on the incredible journey that has brought me to this milestone. Over the years, I’ve survived with flying colors after all the complications that sickle cell disease has thrown at…

Pfizer’s recent decision to withdraw Oxbryta (voxelotor) from global markets feels like a devastating blow for many people with sickle cell disease. Oxbryta’s conditional approval in 2019 by the U.S. Food and Drug Administration gave hope to many, as few treatments exist for patients with sickle…

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…