20-year-old Nike Oyelola shares her courageous journey with Sickle Cell and how she hopes to help others better understand it.
My name is Nike Oyelola. I’m a 20 year old patient with sickle cell (SS). I am currently in my junior year of college with a major in social work. As a result of sickle cell being a genetic disease, I was diagnosed shortly after birth.
Sickle cell doesn’t have a cure (except for bone marrow or stem cell transplants for those with the most severe cases), so I have had to manage it my entire life. I grew up learning as much as I could about my disease.
The hardest part is going into a crisis, which is when red blood cells turn into a crescent moon shape and get stuck in blood vessels causing excruciating pain. There are ways to manage the pain with medications, fluids, and distraction techniques, but there isn’t anything I know of to completely get rid of the cells once they become sickled. I have grown up with pain striking at any time no matter what is going on. It has been difficult having sickle cell, but I have had a lot of help along the way.
I have been treated at Connecticut Children’s Hematology department for most of my life. The hematology staff has been a big support in my life in terms of care and connecting me to resources and events surrounding sickle cell.
My social worker, Nancy Caperino, has had a tremendous impact in helping to connect my family and me to literature on sickle cell, a camp for those with chronic and life threatening illnesses, and Connecticut Children’s Sickle Cell Family Advisory Board.
I decided to make an infographic to explain sickle cell, because I wanted to try to show sickle cell in a visual way that mostly used pictures. I thought that it might help others to understand what sickle cell is and how it affects those who have it. It was also a way to incorporate my Twitter and Facebook pages called Sickle the Cycle, which I created to help raise awareness for sickle cell.
I have a passion towards sickle cell, which serves as my life dedication. Having this chronic illness has had such an impact on my life. Although it can be difficult, sickle cell has completely shaped me into who I am. I am grateful for Connecticut Children’s for allowing me to share my story and to have the opportunity for others to learn about my condition!