Some of my childhood memories still linger. I vividly remember, for instance, the lonely nights spent in my bed while struggling with a painfully distended abdomen, a discomfort extreme enough to take away many nights of sleep. My bed was in the same room as my parents, yet I was…
Columns
Keeping with the theme of February, the month of love, I wanted to offer some practical tips for how to support a partner with sickle cell disease. The reality of living with a chronic illness is that things may not always go well, as the condition can be unpredictable.
Living with sickle cell disease comes with challenges, such as pain crises that can set a patient back days, weeks, or even months. The mental and physical toll can be immense. Because February is often associated with love, I’ve been reflecting on how facing setbacks with sickle cell can…
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…
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,…
Recent Posts
- 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
- For sickle cell patients, developing self-advocacy skills starts in childhood
- Standard sickle cell treatments slash stroke risk in children: Review
- Is sickle cell disease considered a disability?
- Tips for enjoying the most wonderful time of the year with sickle cell
- Big Nova donates $3M to expand access to stem cell transplants
- Investigational SCD therapy shows stronger results at higher dose
- Risto-cel showing lasting benefits for people with severe SCD in trial