For those who are unfamiliar with my previous columns, I often write about a recurring theme: the importance of preventive action in the management of sickle cell disease. I am a staunch advocate of identifying health risks and doing what I can to prevent them. I take my…
Columns
Living with sickle cell disease for nearly 38 years has taken me through various phases: an initial phase of cluelessness about sickle cell complications, a phase marked by fear of those potential complications, and the current phase, in which I’ve managed to conquer that fear. During my childhood…
Last Friday was notable for two reasons: my most recent column was published, and I canceled a planned meeting with two friends at the last minute because of pain. That had me feeling quite deflated and annoyed because I’d made plans I couldn’t realize because of my…
While sickle cell falls under the umbrella of rare disease, it doesn’t feel so rare among my circle of acquaintances. In my community, somebody always knows someone else with sickle cell disease and has a vague understanding of what it is. In the broader community, however, much less is…
I’m extremely passionate about raising awareness of sickle cell disease. That probably comes as no surprise, considering I have the condition and write a patient column focused on precisely that! Still, I like to imagine how greater awareness could improve our patient care and quality of life. It’s…
When Ada, my cousin with sickle cell disease, came home from school one day filled with excitement, I couldn’t help but wonder what had happened. She shared that she’d made a new friend in her class and that they’d become quite close. My attention was piqued when Ada, whom…
As a survivor of sickle cell challenges and a passionate advocate for sickle cell disease prevention and a cure, if I were put under duress to choose between prevention and a cure, I would prioritize prevention, despite many alternative viewpoints. The reason is because prevention is paramount to reducing…
I recently suffered a sickle cell crisis while on a trip to Jamaica, which was particularly difficult because my partner was also ill. I was in an unfamiliar location, and the pain was far worse than usual. But I was prepared, I thought. A few years ago, I…
Is there a worse feeling than when someone you love is unwell and you can’t help them? Because I have sickle cell disease, my immune system is compromised. This means I can catch illnesses easily. When I do get sick, it can be disastrous. A typical cold or flu…
New Year’s resolutions were never really my thing. In the past, my attempts often fizzled out quickly — like the gym membership that gathered dust by February. To avoid disappointment, I swapped out strict goals for a list of hopeful, more gentle aspirations. This year, topping that list was a…
Recent Posts
- Outside, looking in: The silent isolation of living with sickle cell disease
- Bias in sickle cell care may be tied to opioid stigma, new study finds
- How I advocate for my health needs while traveling for work
- Brain development changes seen in children with sickle cell anemia
- Beam to seek OK of gene-edited cell therapy risto-cel for sickle cell disease
- Agios to seek accelerated approval in US of oral mitapivat for SCD
- Japanese agency awards $32M to advance sickle cell treatment to trials
- Intentional lifestyle changes got me through winter without a crisis
- Chicago nurses lead charge to speed up SCD emergency care: Study
- Recognizing the warning signs and symptoms of a sickle cell crisis