Having a big or protruding abdomen is a common habitus or symptom of sickle cell disease. It’s something I’ve dealt with personally throughout my life and I understand how it can impact not only our physical appearance, but affect us psychologically and emotionally too. I have always…
Columns
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…
As I’ve grown older with sickle cell disease, I’ve come to appreciate the incredible community that’s emerged. This network connects us, amplifies our voices, and gives us a platform to share our experiences. I’ve been fortunate to meet some amazing sickle cell warriors who’ve helped deepen my understanding of…
When I was growing up, Beverly Cleary’s “Dear Mr. Henshaw” was one of my favorite books. The novel begins with Leigh, a sixth grader, writing to his favorite author (Boyd Henshaw) for a school assignment and receiving a letter back. The two become pen pals, and through writing letters and…
Over the years, I’ve used my voice as a sickle cell disease warrior, advocate, and health professional to point out the shortcomings of the government, the public, and the healthcare system when it comes to the worsening of sickle cell morbidity and mortality. But today, I need to turn…
Ten years ago, I signed up for a personal training session without telling the trainer I had sickle cell disease. He had no idea about my condition or my limits, so the workout was intense. I pushed through, but afterward I was violently sick and bedridden for days. I…
The past month has been incredibly difficult for me. I lost two close sickle cell warriors in a short time, which has been both heartbreaking and shocking. One of the hardest parts of running a sickle cell support group is experiencing this kind of…
I’ve shared reflections from three days after my last sickle cell pain crisis, and then again a month later. Now, four months on, I find myself in a completely different place physically, mentally, and emotionally. But can I say I’m still recovering? It doesn’t feel like it…
When I began writing this column, I thought I knew exactly what I was stepping into. As a doctor, I’d spent years studying sickle cell disease, memorizing its complications, and prescribing treatment plans. What I didn’t know was how much more there was to learn on the other…
Dating and relationships can be complicated for anyone, but for those living with sickle cell disease, they present even greater challenges. My experience — and that of many other sickle cell warriors I know — has shown me how vital it is to be with a partner who understands…
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