I was very excited to participate in The Human Library as a person with sickle cell, and I was equally excited to get checked out in order to share my story. Sickle cell anemia does not have the same national/global platform as other health disparities, and this was my chance to bring awareness to a much-needed and, often, less acknowledged disease.
Growing up, I just wanted to be normal. Sickle cell anemia is a hereditary disease that I had no control over, as to whether or not I inherited this recessive gene as a non-carrier, trait carrier, or, in my case, pulling both recessive genes, thus inheriting the full disorder.
Naturally, I quickly learned that living with sickle cell anemia was going to be my normal. Doctors did not know much about sickle cell disease, and there were very few, if any, resources and/or research taking place in the late 1970s and early ’80s. In an uncommon turn of events, my older brother also pulled both recessive genes from each of our parents, who were carriers of the sickle cell trait.
My parents, knowing that there was a possibility of another offspring inheriting this illness, as my older brother had been diagnosed from their first pregnancy, decided to test me in utero to determine if I would also inherit sickle cell disease. From the stories that I’ve been told, this was a very abrasive test to determine if I would have the disease or be a carrier. After testing was done and the results were in, it was confirmed that I had indeed inherited both recessive genes just as my brother did and would be born with sickle cell disease.
At the time of my diagnosis and with minimal knowledge in the medical industry about sickle cell, the doctors gave my parents the option that, at that time, was the suggestive option: abortion.
In fact, there was a national recommendation to provide universal screening for sickle cell disease in 1987; sadly, this did not take full national effect until as recent as May 1, 2016. Imagine going to your local pediatrician in a small town and getting the awful news that you would die at the age of 12, 18, or 21.
Hearing the life expectancy of a person living with sickle cell disease left me with little to live for, as my expectancy of making it to adulthood was delivered to me by medical professionals in a very bleak manner. Once I got a handle on my care and how to manage my diagnosis more independently, having this disorder became my biggest motivation.
I say that having sickle cell anemia has been my biggest motivation, because having a crisis is highly unpredictable; therefore, it pushes me to do things when I am feeling well and am able to push through the pain. I never know when I’m going to have a crisis or when I will need management beyond my abilities, so I do what I can, when I can. I do not allow the fact that I have sickle cell define me. I live with sickle cell. It does not live with me.
It was not always roses and berries; I lived life very carefully knowing that I had to take certain precautions to make daily living as normal as it could be for me. With my positive outlook and the care that I receive at Duke’s Adult Comprehensive Sickle Cell Center, I have beaten a lot of odds and am fortunate to have lived to see 39 years as a sickle cellebrity.
“The Human Library: Durham” will be presented as part of the Durham County Library’s Adult and Humanities Programming from 2 to 5 p.m. Saturday, Sept. 30, at Southwest Regional Library, 605 Shannon Road.