Keeping a job while living with sickle cell disease (SCD) can be challenging, especially when you have moderate to severe disease. Symptoms and complications can make it harder to maintain regular work hours or remain in a demanding career. For many warriors, unemployment and financial hardship can add to…
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Note: This column describes the author’s own experiences with an array of treatments. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Ordinarily, like many other people living with sickle cell disease, I take daily medications to help manage my…
Previously, I’d never publicly shared my experiences with delayed puberty and how deeply it affected me. Looking back, I realize that it was an important part of my journey with sickle cell disease (SCD). I hope my story will help young warriors and caregivers understand this often-overlooked complication and…
Recently, I’ve been struggling with a departure from my normal routine. I’ve written about how exercise and good nutrition have helped me manage my sickle cell disease, but I’ve been traveling a lot and have found myself thrown off balance in ways I didn’t anticipate. At first, I blamed…
When I received a stem cell transplant in 2019, I was given something I had dreamed about for more than three decades: the chance to live without sickle cell disease. My brother was my donor, and because he was a perfect match, the transplant process was a success. For…
“We lost a gentle soul yesterday. Rest warrior Daryl Rosborough.” Reading that sentence as I checked my Facebook first thing in the morning felt like a ton of bricks crashing down on me. Daryl was more than a friend; he was like an older brother to me. Sadly, he…
Can people who don’t have sickle cell disease (SCD) advocate for the community? Absolutely. However, I think there is an important distinction that deserves attention. Usually, most advocates are patients, caregivers, healthcare professionals, or family members of people living with the disease. However, I’ve recently seen an influx of…
I recently asked myself a simple question: What does it really mean to live well with sickle cell disease (SCD)? Can someone with a severe, lifelong condition genuinely say they are living well? After reflecting on my journey, I realized that living well has little to do with having…
As both a physician and someone living with sickle cell disease (SCD), I spend a great deal of time reading SCD-related medical literature. Recently, while reviewing several publications, both old and recent, on vaso-occlusive crises, I noticed recurring statements that made me pause: Acute sickle cell pain and vaso-occlusive…
Years ago, I mistook a pulmonary embolism for what I thought was a minor sickle cell disease vaso-occlusive pain crisis, a mistake that could easily have proved fatal. I promised myself afterward that I would never trivialize my symptoms again. As it turns out, that’s easier said than done.
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