Even though I already had my hands full with two toddlers, I agreed to help take care of my young cousin when my mother suggested it. She’d called to tell me that my aunt Celina, who’d recently lost her first son to sickle cell disease and was still in…
Columns
February is often known as the month of love. That makes it an interesting time in the sickle cell community, as I often see differing viewpoints on how to approach dating with the disease. This week, I’ll be speaking on Instagram about love and sickle cell. To…
I’ve shared some of the hurdles I face when traveling abroad as someone with sickle cell disease. I now have something else to add to the list. I recently returned home to the U.K. after a three-week trip to Jamaica. Not only was it my first long-haul flight,…
“I have sickle cell disease. So what?” That was my reaction as an 11-year-old girl about 24 hours after I learned I had sickle cell disease. Even though I had the disease, I was still the best student in my class and had a lovely family. Apart from…
For Rare Disease Day on Feb. 28, I’ll be speaking to medical professionals about sickle cell disease and how they can better support our community. It’s a brilliant opportunity to influence future change and leave a lasting impression on healthcare professionals. In preparation, I have reflected on…
As a child, I was never exposed to serious illnesses like sickle cell disease. Now that I think about it, I was really blessed in that respect. The first time I heard about sickle cell was when I was a teenager and my older sister characterized her best friend…
The beginning of this year has been difficult for me because I have felt unmotivated in my sickle cell disease advocacy. At the end of 2022, I didn’t set any concrete goals for the new year and wasn’t excited about what was to come. These feelings are far removed…
In many of my columns I’ve referred to suffering a sickle cell crisis. But what does that mean? Sickle cell disease is a disorder that affects the red blood cells. These cells are usually circular and biconcave, allowing them to easily transport oxygen around the body. But in…
Last month, I suffered a sickle cell crisis. After battling the pain for four days, I decided to go into the hospital on Dec. 12. Unfortunately, that was a challenge. The first hurdle was securing an ambulance. For the first time in my life, I was put on hold…
For me, 2022 has just been OK in terms of sickle cell disease. I’m still not where I’d like to be health-wise, but I’m getting closer. One thing I’d really like to celebrate is that I haven’t contracted any severe infections this year. That is a big win, and…
Recent Posts
- Intense crises: When sickle cell pain becomes unbearable
- Newer blood thinners tied to less bleeding in sickle cell disease study
- 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