When speaking to a person with a chronic illness, you might do and say things with the best of intentions, but sometimes it may not translate well. Following are some of the things I don’t like to hear. Apologies Sometimes when I tell someone I have sickle cell disease, they’ll…
Columns
COVID-19 restrictions are easing here in the U.K. Prime Minister Boris Johnson said we must “learn to live with this virus,” and he is lifting laws requiring masks and social distancing. It feels like the first real step toward a life after the unanticipated pandemic, though I can’t help…
It’s one thing to deal with the emotional and psychological trauma that comes with a chronic illness diagnosis, and it’s another thing entirely to navigate the treatment, or more specifically, the management plan that comes with it. I know medical doctors mean the best, or at least I want to…
With a chronic condition like sickle cell disease, I sometimes find it difficult to look far into the future. What exactly will my future be like? Will there be more hospital trips? More pain? More sadness? Reflecting on my origin story in a previous column prompted me to question…
One of the many stereotypes of British people is that we can be extremely reserved. In many places in the world, it is common for people to greet one another on the street each morning. This is rare in the U.K., specifically in the southern part of the nation. If…
The trouble with sickle cell disease is that it’s challenging to determine which end of the severity spectrum a person might fall on. A person with sickle cell might do everything correctly — drink water, keep warm, take their medication, get enough rest — and still have severe crises. On…
I can’t stress enough the importance of drinking water. Experts recommend that normal, healthy adults consume six to eight glasses of fluid daily. Staying hydrated allows the body to function more optimally, which is especially important for people with sickle cell disease, as the potential consequences of dehydration are…
I am going to take you behind the scenes of how this column, “Sickle Sagas,” came to be. I will show you everything about how I became an incredibly successful sickle cell advocate and storyteller who changed the world for the better. OK, I’m being slightly dramatic. I haven’t…
Would I be a good mother to him? Would he have a good quality of life? How would I know if he is in pain, and would I be able to soothe him? And most importantly, would he hate me for bringing him into the world? These were just a…
Do We Have to Die for Change?
June 19 was both World Sickle Cell Day and Juneteenth! It wasn’t until last year that I learned about Juneteenth — forgive me, I’m a Londoner. Similarly, many of my peers found out about World Sickle Cell Day only after meeting me. Last year, Juneteenth was highlighted to…
Recent Posts
- 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
- 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