My earliest memories of sickle cell were at seven years old. I recall stints in Hughes Spalding Children’s Hospital that would seem like an oasis compared to my home life. There I was showered with gifts, had access to play rooms filled with toys and was able to receive blood transfusions that got me through countless crises. I also remember the feeling of excruciating pain radiating all over my body that led me to the hospital in the first place. I played hard and loved being active. I didn’t understand that I could not do the same things as kids without sickle cell. I couldn’t even stress out over simple rules of the playground or childish banter. At birth I was diagnosed with hemoglobin SS disease, which is the most common and severe form of sickle cell disease that causes the worst symptoms at a higher rate.
I have lost count of the number of times I’ve fallen to the ground in pain and have needed blood transfusions to restore my health. Through my teen years I was rushed to the hospital once a month to receive blood transfusions, needing at least three units of blood before I felt better. If the blood I needed was not available, sometimes I waited days or multiple hours, adding to the stress I was already feeling. Having blood available for everyone that needs it is so important for people like me that fight sickle cell. It wasn’t fun then and still isn’t easy now, wondering if I will get the blood I need to survive a sickle cell crisis.
A Challenging Childhood
Early on I was forced to adopt a strong mindset. My mother was on drugs most of my life and my father was incarcerated. So, I experienced a lot of adversity at a young age – from coming home to an empty fridge and going to bed hungry, to not having a home at all – such stressors can cause an average person to spiral, but for a person with sickle cell it’s like a double blow. One restless night at my sister’s house shelter, I laid in bed listening to the snores and whispers of those around me. I was 11 years old and somehow, I decided that I couldn’t be consumed with things that were out of my control. At the rate that I was in and out of the hospital, I knew that if I didn’t toughen up mentally I wouldn’t be here long.
Positive thinking helped me tremendously, but it was no magic wand. I still had one of my worst crises a year later at 12 years old. I don’t remember being rushed to the hospital. I just know that I had been stressing out about things going wrong at home, I went into a crisis and woke up two weeks later from a coma. This time it was acute chest syndrome, a condition that plagues many sickle cell patients by causing chest pain, cough, fever, low oxygen level and leads to a viral or bacterial pneumonia.
Finding a New Passion
I have never hidden my sickle cell disease, but it has put a damper on some of my greatest aspirations. Playing football was out; instead I watched from the stands. I found joy in participating in ROTC and led the Color Guard at my school. Dreams of enrolling in the military after I graduated were crushed when I was denied enlistment because I have sickle cell. That was a huge bomb dropped on my future. I forced myself to quickly regroup and find a new passion.
As a kid I wanted to attend summer camp, but my mom never followed through with enrolling me. Now I can live out my dreams as camp administrator for the Sickle Cell Foundation of Georgia. I’m able to advocate for people with sickle cell, share my story and inspire the youth to keep fighting.
A Lifetime Battle
I still go to the hospital nine to ten times a year to receive blood transfusions when hydrating and my usual medications aren’t enough. Sickle cell disease is a lifetime battle and my odds at leading a healthy life depend on whether hospitals have adequate inventories of my A positive blood type or type O blood types. For any person questioning whether their generosity will make a difference, I want you all to know that you are silent heroes. When I receive a blood transfusion and my hemoglobin numbers go up, I feel like I’m back to myself: I don’t feel the pain; I don’t feel drained; It’s like putting gas in the car or batteries in a remote; I’m energized and that is priceless! In the words of my friend Shawn who lost his battle with sickle cell, I urge anyone reading this to not just think about donating blood, but to follow through and do it. Find your local American Red Cross blood donation center, make an appointment and give. Your generosity gives me life and I wouldn’t be here without you.
Blaze Eppinger is a sickle cell patient with a passion for sickle cell advocacy and motivating new and diverse blood donors to give. Blaze works as a camp administrator for the Sickle Cell Foundation of Georgia and enjoys captivating audiences on a variety of stages while sharing his personal journey with sickle cell disease.