SICKLE CELL
LIVING WITH SICKLE CELL ANEMIA An Interview with Stephen Sowell
GLMS recently sat down with Louisville resident Stephen Sowell, age 45, who has lived with the diagnosis of Sickle Cell Anemia( SCA) since he was an infant.
SCA is the most common and the most severe form of Sickle Cell Disease, in which the body produces sickle-shaped red blood cells due to atypical hemoglobin molecules. These sickle-shaped blood cells cause blockages and prevent oxygen from reaching nearby tissues, damaging many organs and causing severe pain.
Thank you to Stephen for opening up about his lifelong struggle with this debilitating disease.
GLMS:“ How long has sickle cell disease been a part of your life?”
Stephen:“ I was diagnosed when I was six-months-old. I’ m the only one of seven brothers and sisters who has it, including my twin sister. Both my mother and dad had the trait. That’ s just how it is. I don’ t complain about it though. I just roll with the punches.
People who have been healthy their whole lives and come down with cancer, it’ s probably a lot harder on them that it has been on me. I think it’ s better that I went through this when I was younger. If that happens, you can come of age and understand what’ s happening. I just pray to God. He brought me this far.”
“ What do you remember about growing up with the disease?”
“ I was a happy kid when I was younger. It didn’ t affect my attitude too much. I remember having flare-ups. Doctors didn’ t have a lot of information on the disease back then, or much technology to treat it. At first, when I was a baby, they thought I had malaria.
Once they figured it out, my parents did everything they could. They were giving to the Sickle Cell Foundation, but we didn’ t even have a clinic here in Louisville. The money was going to places like Atlanta and Cincinnati instead.”
“ How did your parents approach the early days of your treatment?”
“ They were still going through the process of going to different doctors, trying to find out what I was going through. I wasn’ t crying a lot. I was just a normal child. But when I got sick, my eyes would get jaundiced. I would swell up; my hands would get real big. So, my mother and dad stayed persistent on the doctors, saying‘ Tell us how we can take better care of our son.’”
“ When did you first connect to a primary care physician?”
“ When I turned 16, I had to get an adult primary care doctor. My mother and dad picked out Dr. Mary Barry. Honestly, I was skeptical at first. My mom said,‘ Just give it a try and see how it goes.’ So, I first saw her when I was 16. I’ m 45 now and still see her once a year for a checkup. I don’ t see her as much lately, because I haven’ t been sick as much, but Dr. Barry knows me like the back of her hand.”
“ What happens when you get a flare up, when your disease is at its worst?”
“ When my hemoglobin’ s low, I can tell. I’ m aching a lot. I’ m nauseated. I’ m weak. I’ m fatigued. I had a flare up a few weeks ago, and I went to have my blood drawn to see what my hemoglobin level was- it was seven grams. They like to keep my levels between eight and nine. I saw my hematologist, Dr. Shawn Glisson, and received two units of blood to bring me back up to a good level.”
18 LOUISVILLE MEDICINE