Cortney’s Story | Orlando, FL
Kids Conquering Sickle Cell Disease Foundation, FL
“It’s time to put a spotlight on sickle cell disease.”
Cortney’s aspiration to be a hematology nurse is deeply personal. Currently in nursing school, her frequent hospital visits have shaped her studies. Cortney and her late older brother were both diagnosed with sickle cell disease (SCD) as young children, and the diagnosis has had a profound impact on the way Cortney engages with education.
As a child, the physical symptoms of SCD were relentless; Cortney would constantly find herself weak, tired and in and out of the hospital. It was difficult to make plans with friends, partake in extracurricular activities, or keep up with schoolwork because she never knew when she would find herself sick or in the hospital next. To make matters worse, the visible symptoms of the disease, yellow eyes, jaundice face, were a catalyst for bullying.
“A lot of my control is taken with sickle cell, so there is this part of me that wants to control everything else. That’s why I do really well in school, I want to succeed to spite my disease.”
– Cortney, living with SCD
Despite years of playing catch-up for missed lessons as a result of her hospitalizations, Cortney graduated ahead of her class and continues to excel in academia. “A lot of my control is taken with sickle cell, so there is this part of me that wants to control everything else,” she explains. “That’s why I do really well in school, I want to succeed to spite my disease.” Cortney possesses a quiet determination. She is used to standing up for herself – a well-honed skill earned as a result of emergency room doctors questioning her need for medication during painful SCD episodes, which are often extreme and occur without warning.
The ability to be a self-advocate is one of the many things that children and young adults with SCD must learn in order to combat the misunderstandings surrounding their disease. Cortney learned some of these tactics from her involvement in the Kids Conquering Sickle Cell Foundation. The foundation teaches its’ sickle cell ‘Warriors’ the importance of understanding their diagnosis and gives them the tools to better assert their needs to medical personnel.
Cortney’s experience in hospitals, both positive and negative, has formed her into a fierce champion for sickle cell awareness within her nursing program. She is inspired by a pediatric hematology nurse from her childhood, and the memory of her brother who succumbed to SCD too young. At the time of our interview, Cortney is preparing a Zoom lecture to her peers in the Central Florida chapter of the Black Nurses Association on sickle cell disease. Her presentation will increase general awareness of the disease, while also broaching the topic of stigma that is associated with people living with SCD. When she finishes school, she hopes to work with hematologists to help other patients with sickle cell understand and manage their disease.