The challenges of living with a physical disability in a society that is not inclusive can be overwhelming. Sickle cell disease causes both visible and invisible disabilities, and as someone who experiences both, I have faced countless difficulties. I have discussed the struggles of living with invisible disabilities, but…
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Sickle cell disease presents a range of complications, some of which are visible while others are invisible. For the first two decades of my life, I only dealt with invisible complications, which allowed me to keep my challenges private. However, as I entered my early 20s, the visible complications…
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…
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…
Recent Posts
- Blood screen may spot potential complications in sickle cell children
- The good and bad of being a medical doctor and a sickle cell disease patient
- Birth control is safe, with low risk of clots, for women with sickle cell: Review
- Chronic pain means greater disability for young people with sickle cell: Study
- Managing depression while living with sickle cell disease
- Screening tool identifies developmental risks in young children with SCD: Study
- Having my first MRI brain scan reminds me to keep advocating for myself
- Evaluating my options for treating sickle beta-zero thalassemia
- Researchers aim to repurpose diabetes drug to treat SCD kidneys
- Alzheimer’s drug memantine may help prevent SCD crises, especially in kids