Jelesa Alexander is a Registration & Admitting Clerk in the Emergency Department at Halton Healthcare. At the age of 13, Jelesa was diagnosed with sickle cell anemia, a genetic blood disorder that affects hemoglobin, causing red blood cells to become rigid and shaped like a crescent moon, or sickle. This can lead to blockages in blood flow, causing pain, fatigue, and serious complications.
We had the opportunity to sit down with Jelesa to discuss sickle cell disease and its profound effects on those who live with it.
Q: What are some of the common symptoms of sickle cell disease and how do they impact the daily lives of those affected?
A: Individuals with sickle cell disease often experience painful episodes, commonly referred to as “crises”. These episodes can occur in various parts of the body, particularly in the arms and legs.
Many patients can suffer also from anemia, which can lead to jaundice – a yellowing of the skin and eyes. Jaundice is often a warning sign that a crisis may occur soon.
Additionally, sickle cell disease can cause complications with the spleen. The sickle-shaped red blood cells can become trapped in the spleen, leading to enlargement which affects blood flow.
Q: Why is sickle cell disease more prevalent in the Black community compared to other populations?
A: Sickle cell disease is notably more common in individuals of African descent. This is due to several factors. One significant factor is the historical relationship between sickle cell disease and malaria. The sickle cell trait offers some protection against malaria, which has led to a higher frequency of the gene in populations from regions where malaria is common. As a result, the genetic predisposition to sickle cell disease is more prevalent in these communities compared to other populations.
Q: How do social determinants of health contribute to the disparities seen in the sickle cell disease outcomes?
A: Working conditions can significantly affect individuals with this condition. Many may only be able to perform modified duties, such as light lifting, which can limit job opportunities. Weather conditions, like extreme cold, can worsen symptoms, leading to increased absences from work or school.
Social support and coping skills are also very important. Having a strong network of family and friends can provide emotional and practical support, which is critical for managing the disease. Individuals who lack this support may struggle more with their condition.
Access to outside help, such as therapy, is also important for coping with the disease.
Q: Did your knowledge of sickle cell disease impact your decision to pursue a career in healthcare?
A: Yes, absolutely. I am personally committed to increasing awareness of sickle cell disease, motivated by my own experiences of being frequently ill and misdiagnosed. I never want anyone else to go through what I did, so I try to spread awareness to ensure people with sickle cell disease can receive the best care possible.
Q: Are there any specific educational programs or initiatives that you’re aware of that are aimed at increasing awareness of Sickle Cell Disease?
A: The Sickle Cell Awareness Group of Ontario (SCAGO) also offers valuable information and resources aimed at educating the community about the disease. The SCAGO is also involved in fundraising events, such as their yearly Hope Gala, to support research, peer support programs and more.