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…
Columns
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…
I have always been a passionate advocate for sickle cell disease prevention, sometimes even prioritizing it over advocating for a cure. I envision a world where no child has to suffer the complications and pain of the disease, although realistically, I don’t see that happening yet. Most of the…
I learned almost by accident that last week was Invisible Disabilities Week. I had no idea such a week even existed, which says something about the invisibility of disabilities in our society. The fact that something so significant can come and go with so little awareness speaks volumes about…
Communication is necessary for any relationship to form, whether it’s platonic or romantic. The more I experience different types of relationships, the more I realize how pivotal communication is in maintaining their health. One of the most challenging times for me to communicate is during a sickle cell disease…
As the calendar fills up with weddings, birthdays, end-of-year events, and long-overdue catch-ups, it’s natural to feel excited. For those of us living with sickle cell disease, a second feeling often creeps in: anxiety. I have worried about how I will manage the fatigue. What do I do if…
How quickly time flies! I can hardly believe I’ve nearly completed another trip around the sun. It feels like only yesterday I was penning my thoughts for my 38th birthday column. I’m overwhelmed with gratitude that the warrior in me continues to prevail. I’ve survived another year, working toward…
Sickle cell disease is classified as a rare condition. Yet, for a long time, that was hard for me to believe, especially during my teenage years. Growing up in South London, a city with a large Black African population, I never felt that sickle cell disease was rare; it…
When you live with sickle cell disease, the chance of a hospital admission is always one crisis away. Pain can escalate quickly, infections can creep up without warning, and what starts as a niggle can spiral into something that takes you out of your daily life for weeks.
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