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Here’s a feeling that I’m certain other sickle cell disease patients relate to, and who knows, perhaps their carers do, too: It’s astounding how much sickle cell can change the body over time. I know I say it often, but honestly, it feels like the disease has its own…

Richard Bayliss is 44 years old and has sickle cell disease with hemoglobin SS disease. He’s in the final year of a master’s degree in education, culture, and society at a university in London. He also works part time as a community support worker helping vulnerable adults and those…

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…

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…