Mary is a 30-year-old London-based sickle cell patient using her experiences to build up others and raise awareness of what it’s like to live with a rare disease.I learned almost by accident that last week was Invisible Disabilities Week. I had no idea such a week even existed, which says something about the invisibility of disabilities in our society. The fact that something so significant can come and go with so little awareness speaks volumes about…
As the calendar fills up with weddings, birthdays, end-of-year events, and long-overdue catch-ups, it’s natural to feel excited. For those of us living with sickle cell disease, a second feeling often creeps in: anxiety. I have worried about how I will manage the fatigue. What do I do if…
When you live with sickle cell disease, the chance of a hospital admission is always one crisis away. Pain can escalate quickly, infections can creep up without warning, and what starts as a niggle can spiral into something that takes you out of your daily life for weeks.
As September comes to a close, so does Sickle Cell Awareness Month, an annual time dedicated to highlighting the realities, challenges, and resilience of people living with sickle cell disease. While the fight for awareness and equity continues daily, I’m cautiously optimistic that something is shifting. This year, I…
Whew! I’ve been on a rough ride recently. Regular readers of my column may have noticed that I’ve been absent for a while. Living with sickle cell disease has taught me resilience, patience, and the importance of listening to my body. It’s also reminded me how unpredictable and overwhelming…
One of the more annoying parts of sickle cell disease is its unpredictable nature. One day, you think you understand the illness and how it affects your body. The next, sickle cell demonstrates that it’s the boss by throwing a massive curveball your way. When faced with a curveball…
I’m writing from the heart of the EHA2025 Congress, hosted by the European Hematology Association (EHA), in Milan, Italy. I’m surrounded by leading experts, researchers, and, most importantly, fellow patients who understand what it’s like to live with sickle cell disease. Conferences like this aren’t just for clinicians…
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…
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…
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…
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