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.
Why does everything have to be a fight? I ask this because the past few weeks have been frustratingly difficult for me. I recently had to drive to a different county to sort something out. On the way back, I got stuck in traffic. A drive that was supposed to…
I have been on a journey since 2018 to share my experiences with sickle cell disease and help others avoid some of the mistakes I’ve made along the way. This journey has exposed me to many different concepts that I reevaluate regularly. For instance, I’ve written previously about…
Dear Future Caregiver, As I look back on the transformative journey I’ve embraced as a caregiver to a person with sickle cell disease — its ups and downs, joys and frustrations, and profound sense of purpose — I want to impart some invaluable insights I dearly wish I…
Jaundice is one of the most prevalent manifestations of sickle cell disease. Caused by an excess production of the compound bilirubin, jaundice results in a yellowish discoloration of the skin, mucus membranes, and the white part of the eyes, which is called the sclera. In this column,…
In popular culture, self-care often seems to be equated with indulgence or luxury, such as spa visits, retail therapy, or fine dining. But I believe this perception is flawed, and that buying into it does people a disservice. Essentially, self-care involves looking after and prioritizing our physical, spiritual, mental, and…
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