Jelesa Alexander

My journey started quite uniquely because I did not find out I had sickle cell anemia until I was thirteen. When I had an arm crisis before the diagnosis, healthcare providers thought I was being abused and they put me in a cast when I was actually having a sickle cell crisis. One year, close to the holiday season, I went to the hospital with gallstones and had my bloodwork done, which is when they discovered that I had sickle cell anemia. My mom has always suspected that I had more than just the sickle cell trait due to serious symptoms I would have, but it was still shocking and emotional for her when this was confirmed on Christmas Day. Honestly, my life completely changed after that diagnosis. I feel lucky to have a great support system around me, including my family, friends, healthcare team, and the sickle cell support group in Hamilton.

Elementary school was a challenge for me, especially since sickle cell disease kept me out of the classroom for a week or two at a time due to hospitalizations, causing me to fall behind on my schoolwork. I am someone who likes keeping on top of my work, so catching up on my schoolwork after missing weeks of class would be incredibly difficult. It would have been easier for children with sickle cell disease if teachers would send homework so that the student does not fall behind, especially in those primary school grades, where learning to read and write is so important. Having that extra work to do in the hospital rather than watching television or playing video games would help students stay on top of their schoolwork and excel at school. Nowadays at work, I face similar struggles when it comes to having to miss work and catching up afterwards. Unlike my experience at school, I have incredible support from my colleagues and supervisors, who check on me every single day and want to make sure that I am okay first. I have also realized that though I think about working on those days when I am unable to work, I also need to take care of myself first before I can go back to work.

In the emergency department and my interactions with healthcare providers, my experiences have been very positive. Some of my best experiences occurred at Mackenzie Health in Richmond Hill – the absolute best hospital for sickle cell anemia patients, in my opinion. The waiting time was extremely low, they gave oxygen right away, the providers were very knowledgeable, and I never had such great healthcare service at a hospital. It is important to me that physicians and nurses understand what the first steps are in my care. My experience is improved knowing that they want to make me feel comfortable, even when I am squirming in pain. Clear communication is also valued: right now, I could email my nurse and she would get back to me quickly with detailed information about my situation.