Columns

In the past, I would eagerly anticipate news of drug approvals for the management of sickle cell disease. The potential of new medications usually offered a glimmer of hope for sickle cell patients like me. The possibility that they could improve management of the disease and positively affect the…

Mentoring young people with sickle cell disease has been an enriching endeavor. I’ve learned and shared a lot about how the disease affects people differently. As a result of these differences, I must figure out how to best support each mentee. I recently had a conversation with…

Having a child with sickle cell disease can prompt many emotions for parents, particularly guilt. In this column, I’ll discuss some of the factors that contribute to this type of guilt and provide guidance on how to cope with it. In my many years of living with sickle…

On Sunday, Oct. 29, daylight saving time ended here in the U.K., meaning we set our clocks back one hour. In the week leading up to this, we experienced a sudden drop in temperature. It’s still dark in the morning when I leave home, and now it’s dark again by…

I’m constantly going through physical, spiritual, and mental growth. Removing or changing learned behavior and patterns, for example, has allowed me to become a better version of myself. However, I’ve been walking with limits on my body for years because of sickle cell disease, which subconsciously has led…

The other day, my cousin Ada asked me a question that stopped me in my tracks. I’d known that she had some idea, maybe something like an overview, about her sickle cell illness. When she started living with me, she was a smart-mouthed 8-year-old, and now she’s approaching her…

Sickle cell disease, as most of you readers know, is a group of genetic blood disorders characterized by chronic anemia, acute and chronic pain, organ damage, and a possibly reduced life expectancy. But despite the virulence of this disease, it’s highly under-researched. A significant knowledge gap exists between…

It’s no secret, especially for those who read this website, that one of the main symptoms of sickle cell disease is a vaso-occlusive crisis. When I say I’m experiencing one of those, what thoughts come to mind? I encounter varied types of crisis pain at varying severities. Based…

As I sat in the sterile, fluorescent-lit room, a sense of determination and apprehension coursed through me. I wasn’t here for myself; I was here to donate blood for my little cousin, Ada, who was bravely battling sickle cell disease. The journey of being a caregiver for someone with…

Caregivers for people living with sickle cell disease provide physical, emotional, and sometimes financial support. They can be parents, siblings, spouses, friends, children, and extended family. I think healthcare professionals can be caregivers, as well. Their role is crucial to the overall health of anyone with sickle cell.