Sickle cell disease is highly misunderstood, and our patient community is acutely aware of this. One of the key lessons I’ve learned throughout my journey with this illness is the importance of a strong community. Fighting sickle cell each day and learning to navigate the world as a…
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Managing multiple sickle cell complications can be emotionally and physically overwhelming. Today I’d like to share an experience that still resonates deeply with me: my heartbreaking reaction to the diagnosis of one of those complications. Interestingly, it wasn’t the worst I’ve faced, but my reaction to it was undoubtedly…
I recently had my first blood transfusion of the year. It’s one of the most common treatments for sickle cell disease. Two types of transfusions are used to treat sickle cell patients: top-up, or simple, in which healthy blood is delivered through a cannula, and exchange,…
Sickle cell disease is a constant, annoying “companion” in my life. My list of grievances about the illness is never-ending, but one of the things I find most daunting is the disease’s unpredictable nature. There’s almost no way to know when a sickle cell pain crisis will strike. Unfortunately,…
With sickle cell disease, pain is often ever-present. Many people who have this disease experience various forms of pain throughout their lifetimes. Sometimes the pain is acute, other times it’s chronic, and still others it’s acute-on-chronic (when acute pain develops into chronic pain). Pain may be caused by various…
I wanted to start new habits at the end of last year instead of at the beginning of 2025. Several sources told me I didn’t need to wait until the start of a new year to make changes, so, in typical push-myself fashion, I attended step aerobics classes. The first…
Living with sickle cell disease comes with a heavy cost. Much of your time is spent seeking to understand your body, how the condition impacts you as a person, and then adjusting your lifestyle to maximize this knowledge. This is a never-ending process because life takes you through seasons,…
As last year drew to a close, a thought-provoking post in the Sickle Cell Celebs Facebook group inspired me to reflect on what I wish people understood about sickle cell disease. This introspection led me to come up with a long list that I’ve decided to share. There’s…
One Saturday evening, I was sitting on the sofa with my husband watching a film. Suddenly, I felt a sharp, stabbing pain pierce through my chest. “Babe, call an ambulance,” I uttered just in time before falling to the ground and screaming in agony. A standard weekend had become something…
I’ve previously written about the difficulties I’ve sometimes faced when trying to get my prescriptions filled to treat sickle cell disease. In a stroke of luck about a year ago, I found a pharmacy that is much better suited for my needs. The staff at this particular pharmacy is…
Recent Posts
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- Alzheimer’s drug memantine may help prevent SCD crises, especially in kids
- Red blood cell breakdown may drive cognitive problems in SCD
- Looking back at the 5 worst sickle cell crises of my life
- Fetal hemoglobin protects against sickle cell lung problems: Study
- Reflecting on a year of choosing myself while living with sickle cell disease
- New year, old goals, because repeating health resolutions works for sickle cell
- Researchers compare gene therapies for sickle cell disease in mice
- Emmaus to sell North American rights to sickle cell treatment Endari