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…
Columns
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…
Whenever I’m asked to list the symptoms of sickle cell disease (SCD), I am always confused about where to begin. The condition is fundamentally a blood disorder, and every organ needs a steady supply of blood to survive. As a result, SCD can affect virtually any part of the…
As a medical professional living with sickle cell anemia, I’ve chosen to dedicate myself to sickle cell advocacy and education. On this journey, I’ve realized a lot of people cannot distinguish between sickle cell disease and sickle cell anemia, including some health professionals. Today I’m using my platform to…
Part of my coping mechanism after a sickle cell crisis is to forget it ever happened. To address that, this year I started an audio journal during the recovery process as a way to self-assess where I was and note how recovery tracks for me days after a crisis.
Being a caregiver to someone with sickle cell disease isn’t a role anyone can truly prepare for. It’s a calling that finds us, and it stems from love, loyalty, and necessity. My caregiving journey began with caring for my cousin, a vibrant, witty, and spirited soul whose strength…
Recent Posts
- New reimbursement deal in Germany expands access to Casgevy for SCD
- New York study finds regional gaps in sickle cell disease hospitalizations
- When a sickle cell pain crisis interrupts a stretch of good health, part 1
- Scientists discover how stressed red blood cells make hemoglobin
- How my sickle cell disease advocacy has evolved over time
- New study links sickle cell anemia to lower ovarian reserve in women
- $3M Breakthrough Prize honors duo whose work changed SCD treatment
- Etavopivat Phase 3 results support potential approval in sickle cell disease
- New diagnoses result in new grief and a new relationship with my body
- Study finds lower treatment use among SCD patients in sub-Saharan Africa