I learned almost by accident that last week was Invisible Disabilities Week. I had no idea such a week even existed, which says something about the invisibility of disabilities in our society. The…
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As the calendar fills up with weddings, birthdays, end-of-year events, and long-overdue catch-ups, it’s natural to feel excited. For those of us living with sickle cell disease, a second feeling often creeps in:…
When you live with sickle cell disease, the chance of a hospital admission is always one crisis away. Pain can escalate quickly, infections can creep up without warning, and what starts as…
As September comes to a close, so does Sickle Cell Awareness Month, an annual time dedicated to highlighting the realities, challenges, and resilience of people living with sickle cell disease. While the fight…
Whew! I’ve been on a rough ride recently. Regular readers of my column may have noticed that I’ve been absent for a while. Living with sickle cell disease has taught me resilience, patience,…
One of the more annoying parts of sickle cell disease is its unpredictable nature. One day, you think you understand the illness and how it affects your body. The next, sickle cell demonstrates…
I’m writing from the heart of the EHA2025 Congress, hosted by the European Hematology Association (EHA), in Milan, Italy. I’m surrounded by leading experts, researchers, and, most importantly, fellow patients who understand what…
I was recently discharged from the hospital after experiencing a severe sickle cell crisis. It was one of those episodes that lingers. The kind that leaves you grappling not only with physical pain,…
Living with sickle cell disease is no small feat. It’s a condition that comes with a host of symptoms, complications, and issues that are unpredictable and span a lifetime. When people think…
First things first: Take a deep breath. Finding out your child has sickle cell disease can be overwhelming. It’s not what you planned or hoped for, and while it changes things, it doesn’t…
Two of the most commonly known symptoms of sickle cell disease are a vaso-occlusive crisis (perhaps the best-known symptom) and fatigue. But others aren’t so well-known; in fact, I’d say most people aren’t aware…
Traveling to cold climates with sickle cell disease can be daunting. Low temperatures can trigger a crisis, causing intense pain and discomfort. None of us want that. I recently returned from a…
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