Meet Nike Oyeola–a Connecticut Children’s patient who is working hard to raise awareness about sickle cell disease. People with sickle cell disease have red blood cells that are shaped like crescent moons, rather than round discs. This can cause such problems as infections, pain, anemia and damage to organs. Nike recently created the “Faces of Sickle Cell” digital feature on the Crescent Cell website to spotlight those who live with or treat the disease.
What is the mission of the Crescent Cell?
The Crescent Cell is an initiative with a mission of raising sickle cell awareness and support. We collaborate with patients, families, health care centers, and sickle cell groups to foster greater knowledge of sickle cell in Connecticut and beyond.
What inspired you to create the “Faces of Sickle Cell” feature?
I was born and raised in Connecticut. I’m have sickle cell, myself, and have been a Connecticut Children’s patient most of my life. I was inspired to create the Faces of Sickle Cell mosaic after experiencing a lot of stigma and lack of knowledge of sickle cell outside of the clinic. I felt that a lot of people have heard the name sickle cell, but they aren’t really sure what it means to have the disease.
I wanted to put faces, stories, and emotions to the illness in a shareable and visible way. I also wanted to highlight that each individual—patient, family member, healthcare professional, etc.—is affected in a way unique to their experience. So, I thought to do an online photo mosaic.
What do you most want the general public to know about sickle cell disease?
Most people I have met recognize sickle cell from science class, but it goes beyond the textbook. I would want the public to know that sickle cell is tough, not only because of the lifelong pain and complications it causes, but also because it feels like we, as patients, are fighting the battle silently and sometimes alone.
I think that each of our stories have a common theme of hope, though. It’s a hope for the future. My hope is that people will learn more about the disease and that they will get involved. There are different ways to help, like sharing a post, donating money, giving blood, or registering for the bone marrow registry. I strongly believe joining together is the key to ending sickle cell.