Columns

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…

If you’re a caregiver, do you ever feel like you always need to be strong? That you should be able to withstand everything life throws your way because someone else is depending on you? We caregivers have a tendency to put our emotions aside or bottle them up and wear…

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…

I’ve discussed before how infections have been a menace to managing sickle cell disease. I’ve also explained how sickle cell patients are more susceptible to infections because of our compromised immune systems, splenic dysfunction, and sometimes, chronic inflammation. Infections can be both triggers of sickle cell…