Living the Life of a Sickle Cell Warrior
Posted September 15, 2014 by Fatima Oyeku
In support of National Sickle Cell Awareness Month, NICHQ invited Fatima Oyeku, a woman living with sickle cell disease, to share her perspective. Fatima is the cousin of Suzette Oyeku, MD, MPH, NICHQ’s Strategic Project Director for several quality improvement projects focused on improving care for people with sickle cell disease. Please visit the sickle cell section of our website for more information about the disease and our work.
A couple of months ago, I came to the realization that National Sickle Cell Disease Awareness Month usually rolls in and out for me in September without much notice or effort.
This year, I committed myself to explaining what sickle cell disease (SCD) really is and what it does to people, like me, who have it. I can't describe the pain I feel on a daily basis, but imagine the worst pain possible, and you’ll begin to understand.
Coming from Nigeria, I honestly thought people would be more knowledgeable about the disease in America, but I quickly discovered how wrong I was. I was confused as to why a lot of people were not aware of their genotype or what that even meant. I've met way too many people with children suffering from SCD who are learning and asking what to expect as they go along.
SCD is a hereditary red blood cell disorder. People can have a simple test done to determine if they have the sickle cell trait. If both parents have the sickle cell trait, there is a 25 percent chance with each pregnancy that a child will have the disease. The disease involves painful episodes when red blood cells morph into a crescent (“sickle”) shape and get stuck in small blood vessels. It distresses me to see babies and toddlers in such agonizing pain. It’s even harder to watch a child cry for hours and hours when I know the parents didn’t know their carrier status prior to conceiving because a simple test would have helped them make an informed decision.
Growing up, I wondered why the 25 percent chance landed on me. I always begged my parents to make the pain stop and promised never to complain again if they would. Of course that was just the agony talking—the moment the pain subsided, I was back to being a normal child, all promises forgotten; until my next crisis. Through each crisis, my mom would sit, praying and crying right along beside me. My dad would be behind her acting tough, but I think I might have caught him wipe away a few tears.
My goal as a sickle cell warrior is to get people to know their carrier status. Maybe I'm just being overly optimistic, but I honestly think SCD could be eradicated if more people knew their trait status and had the opportunity to make an informed decision about having children. My advocacy journey goes beyond the month of September. As an individual living with the disease, I want to see the statistics go down each year, but I cannot do this alone. I implore everyone to go out and find out their sickle status to end the cycle.
While advocating for the end to this disease, I can't forget those of us dealing with it every day. It can be such a sensitive topic to discuss and, believe me, it took me a while to get there. I always feared what people would think about me. I was embarrassed to speak up when I was in pain yet again. It took me a while to get to the point where I could publicly discuss my struggles. But I realized that there were many people out there suffering in silence who could possibly be helped.
Fully knowing about one's disease is the key to living a healthy and fearless life. People tend to judge what they do not know; once I started educating people on my condition, I noticed a change in myself and the way I was perceived. Above all, my family is my driving force. They are very encouraging and extremely patient with me.
It's not an easy struggle and sometimes I do feel like I'm fighting a battle I can never win, but it is rewarding to know that I could be saving someone from pain and misery, either by sharing my story or by ending a sickle cycle.
Fatima Oyeku was diagnosed with sickle cell anemia when she was eight years old. Now 31, she works as a senior technical representative for a software company in Atlanta, GA. Born in Nigeria, she is the youngest of 10 children and has lived in several different countries. She holds an associate degree in business administration and is also a phlebotomist.