Columns

“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…

A few weeks ago, I spent a weekend with new family members, and it was the most action-packed weekend I’ve had in a while. I was exhausted by little people! I helped set up a 3-year-old’s birthday party. I was a pretend patient for the newest toddler doctors and at…

I recently began training to become a mentor to children with sickle cell disease. As part of the preparation, I’ve reflected on my teenage experiences with sickle cell. What was my mindset during that period? I was fearless and ignorant of my limitations. I thought I was invincible.

Earlier this week, I received an email that left me in tears. Its content is unimportant. But what I can share is that it was disappointing and related to things I require to manage sickle cell disease. I had been fighting for these things for nearly two weeks. My…