Because today is recognized as Valentine’s Day or “love day” across much of the globe, I want to explore the difficulties that can arise within romantic relationships when one partner has sickle cell disease. (Fun fact: Many parts of the Eastern Orthodox Church celebrate Saint Valentine on…
Columns
Hydration plays a vital role in the management of sickle cell disease. It offers numerous benefits, including enhanced blood flow, and can help prevent or treat sickle cell crises and other disease complications. Sickle cell is a genetic disorder that alters the shape and structure of red blood cells.
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…
Recent Posts
- New reimbursement deal in Germany expands access to Casgevy for SCD
- New York study finds regional gaps in sickle cell disease hospitalizations
- When a sickle cell pain crisis interrupts a stretch of good health, part 1
- Scientists discover how stressed red blood cells make hemoglobin
- How my sickle cell disease advocacy has evolved over time
- New study links sickle cell anemia to lower ovarian reserve in women
- $3M Breakthrough Prize honors duo whose work changed SCD treatment
- Etavopivat Phase 3 results support potential approval in sickle cell disease
- New diagnoses result in new grief and a new relationship with my body
- Study finds lower treatment use among SCD patients in sub-Saharan Africa