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