As the new year begins, I’ve been reflecting deeply on all that happened in 2025. Living with sickle cell disease has never been easy, but last year marked a decisive shift for me. For the first time in a long while, I stopped allowing the condition to dictate every…
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The beginning of a new year often feels overwhelming. I tend to ride a wave of excitement after spending time with family and friends, even as I feel a great deal of anxiety about setting health-related goals for the upcoming year. The media can make me feel as if my…
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…
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…
I have a confusing relationship with winter. It’s one of my favorite seasons, but it causes me the most harm. It’s not unlike that one pair of shoes that look amazing on, but leave you with blisters and bruises. But my “blisters” are severe musculoskeletal pain and my “bruises”…
The challenges of living with a physical disability in a society that is not inclusive can be overwhelming. Sickle cell disease causes both visible and invisible disabilities, and as someone who experiences both, I have faced countless difficulties. I have discussed the struggles of living with invisible disabilities, but…
Sickle cell disease presents a range of complications, some of which are visible while others are invisible. For the first two decades of my life, I only dealt with invisible complications, which allowed me to keep my challenges private. However, as I entered my early 20s, the visible complications…
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 write today to express my sincere appreciation for the care and love doctors, nurses, and all health professionals show to people with sickle cell disease. They are such remarkable caregivers. Where would we warriors be without their help? They are truly indispensable. However, as a healthcare professional living…
“Thank you for giving me grace while I dropped off the face of the earth last week.” I regularly make this kind of comment to my best friend, who has known me since I was 4 years old. Because of sickle cell disease, I sometimes neglect to respond when…
Recent Posts
- Recognizing the warning signs and symptoms of a sickle cell crisis
- US senators seek 5 more years of federal funding for stem cell program
- Adults with SCD face high risk of stroke in their 30s and 40s, study finds
- Sickle cell doctors face higher burnout than other specialists: Study
- 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