Columns

I recently had the first-ever MRI scan of my brain, not something I ever expected. Getting an MRI came up during one of my routine sickle cell disease checkups, appointments I usually have every six months. As the doctor reviewed my medical history, she noticed something important. Here…

Note: This column describes the author’s own experiences with hydroxyurea and thoughts about other treatment options. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I spent the first week of the year recovering from a nasty cold. After two…

In my 39 years with sickle cell disease, pain has been an uninvited and frequent guest and my most prominent symptom. Sickle cell crises are acute episodes of pain caused by the sickling of red blood cells, which impairs blood flow throughout the body. While I’ve had countless painful episodes…

As the new year begins, I’ve been reflecting deeply on all that happened in 2025. Living with sickle cell disease has never been easy, but last year marked a decisive shift for me. For the first time in a long while, I stopped allowing the condition to dictate every…

The beginning of a new year often feels overwhelming. I tend to ride a wave of excitement after spending time with family and friends, even as I feel a great deal of anxiety about setting health-related goals for the upcoming year. The media can make me feel as if my…

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…

I have a confusing relationship with winter. It’s one of my favorite seasons, but it causes me the most harm. It’s not unlike that one pair of shoes that look amazing on, but leave you with blisters and bruises. But my “blisters” are severe musculoskeletal pain and my “bruises”…

The challenges of living with a physical disability in a society that is not inclusive can be overwhelming. Sickle cell disease causes both visible and invisible disabilities, and as someone who experiences both, I have faced countless difficulties. I have discussed the struggles of living with invisible disabilities, but…

Sickle cell disease presents a range of complications, some of which are visible while others are invisible. For the first two decades of my life, I only dealt with invisible complications, which allowed me to keep my challenges private. However, as I entered my early 20s, the visible complications…