Living with sickle cell disease requires more of a patient than just managing symptoms. One major necessity is the ability to effectively communicate one’s needs. Self-advocacy is a lifelong skill that enables people with the disease to effectively navigate healthcare systems, educational settings, workplaces, and personal relationships. When nurtured…
Shaniqua’s Sickle Chronicles – a Column by Mary Shaniqua
As part of my advocacy, I frequently deliver keynote speeches and participate in panel discussions, and I’m often asked a particular question: “Is sickle cell disease a disability?” My answer is always the same. Here in the U.K., where I live, the Equality Act 2010 defines disability as…
Today, I woke up with a severe headache — again! It’s been four long, exhausting weeks of feeling like someone has set up camp behind my eyes with a hammer. The ache pulses before I’m even fully conscious, as if sickle cell disease is trying to remind me who’s…
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…
Recent Posts
- Disease burden heavy for SCD patients in US, despite promise of gene therapy
- The conversation we avoid: Telling children they have sickle cell disease
- New study finds distinct molecular signatures in newborns with SCT
- Blood test may improve kidney damage detection in children with SCD
- Understanding the impact of leg ulcers in sickle cell disease
- Asthma seven times more likely in SCD children than in unaffected siblings
- Sickle cell drug at high dose eases anemia symptoms in severe SCD
- Researchers urge more talk on menstrual pain in sickle cell clinics
- Sickle cell patients shifting to adult care visit ER more often: US study
- Early results of trial testing tebapivat in SCD expected later this year