Sickle cell disease (SCD) is a dynamic condition that affects people differently. Its symptoms and complications are evident in some patients from childhood, while in others, it may be silent or asymptomatic. There is a common misconception that every child who lacks obvious symptoms or has an “asymptomatic”…
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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, but with the discomfort of uncertainty. Perhaps it’s due to my professional background, but I have…
Malaria remains one of the most common triggers of sickle cell crises in patients living in malaria-endemic regions, while sickle cell disease (SCD) also predisposes patients to frequent malaria infection. As a result, malaria prevention has become one of the mainstays of SCD management in these areas. Malaria…
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 about sickle cell disease, the most commonly known symptom is the vaso-occlusive crisis, also…
I’m a big advocate for giving myself time to recover after a sickle cell pain crisis. After my last crisis, however, I severely underestimated how long this process would take. It’s been two months now, and I’m finally able to return to everything I enjoy. I recognize myself again.
Sickle cell habitus, the distinct physical features of some people with sickle cell disease, are typically associated with patients who have more severe forms of the disease, such as sickle cell anemia. But the severity of sickle cell disease can vary greatly from one patient to another because of…
While I’ve been a sickle cell disease (SCD) advocate for more than two decades, I only seriously committed to this work after experiencing one of my worst complications: a case of avascular necrosis, which causes the death of blood tissue. It left me bedridden for…
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 end anything. This diagnosis may bring a wave of guilt, fear, and grief. That’s completely…
Richard Bayliss, 44, has hemoglobin SS, a severe form of sickle cell disease that comes with anemia; thus, it’s sometimes referred to as sickle cell anemia. He’s in the final year of a master’s degree in education, culture, and society at a university in London. He also…
Several weeks ago, when news of the first sickle cell disease patient to be cured by gene therapy went viral online, I completely ignored it because I wasn’t interested. As a sickle cell advocate and educator, I was tagged repeatedly on these articles. Despite my initial reluctance to post…
Recent Posts
- Gene-editing therapy frees first trial participant from SCD symptoms
- Why I refused to stay silent about my sickle cell disease
- Stem cell transplant for SCD beats gene therapy on cost: Study
- Fulcrum scraps sickle cell drug after FDA raises safety concerns
- Elevated levels of hormone EPO tied to risk of blood clots in SCD: Large study
- Use of disease-modifying therapies on the rise in SCD: US study
- Reflections on grief, loss, and a philosophy of life with sickle cell
- Higher vitamin A linked to better lung function in sickle cell anemia
- Attending graduate school with sickle cell disease requires balance
- New off-the-shelf gene editing may treat sickle cell without transplant