Living with Sickle Cell Disease
By Jana E. Pye, Editor, editor@newsandpress.net
September is Sickle Cell Awareness month, and this Saturday Felecia Hickman is making it her mission to see that as many people in Darlington County learn about the disease as possible, and receive free testing at an event at Center Baptist Church in nearby Timmonsville. Prior to the event, Hickman shared her story of living with the disease with the News and Press.
How old you were when you were diagnosed? Does anyone else in your family suffer from the disease, or friends?
Felecia Hickman
I was three months old when I was diagnosed with Sickle Cell Disease. My parents were young, and they both had the Sickle Cell trait. Neither of them knew they had it, and also didn’t know anything about Sickle Cell Disease. My mother started to take classes and do research about this disease; she learned a lot from my doctors and by asking questions. I have a younger brother who also has Sickle Cell trait he’s very healthy. I’m the only one in my family that really actually deals with the disease that I am aware of.
What is it like to have the disease? How will it affect you as you age?
Having this disease can be very stressful at times, but as I got older I learned how to cope with it. I learned what triggers my crisis, so I try to avoid things that make me sick. Sometimes though, you can just become sick at any time without having to do anything. I try to manage my sickness at home and when the pain becomes unbearable I usually call my doctor before going to the emergency department. I am now 29 years old I tell people all the time that it can affect you, depending on how you take care of yourself. I take really good care of myself and try to drink plenty of fluids. Having this disease, I see so many people with it who really don’t take care of themselves. They may be in the hospital a lot, or always want pain medicine. Patients like that make it hard for people like me – who hates being sick – and when I may go to any E.R. some doctors make think I’m only there for medication.
What types of treatment/medications, etc. have you had to take with the disease?
I don’t take medicine on a daily basis; I only take medication as need it. I take hydromorphone when I’m having a little crisis, meaning in pain, but not as bad. Then I’ll take Oxycodone as well before I even try going to the E.R. If neither one of them is working, I usually go in E.R. for a couple of hours to have I.V. medication with fluids; that’s the one thing that will take my pain away fast depending on how bad my body is aching are where my pain is.
What do you most want people to know about Sickle Cell Disease?
I want people to know that Sickle Cell Disease is an inherited red blood cell disorder; inherited means passed down from genes from parent to children and it is not contagious. I want people to know that testing didn’t started until 1987, so anyone who was born before than should get tested – and testing for Sickle Cell is free. People can have this disease and won’t even know it until they get tested. Sickle Cell disease is a disease that lots of people don’t really know about or understand. So that’s I every chance I get I try to help someone to understand my life, and others who deal with this on a daily.
Describe what the testing process is.
The testing process is just a simple finger stick, and you can get your results in mail a few days afterwards. But now, they are coming out with test where you can find out in just a few minutes by a finger stick.
Is there anything else you want to share, such as wisdom you’ve learned from others on how to deal with it, or your faith?
I want anyone who has Sickle Cell Disease or know someone with this disease to know you are a fighting warrior. This is your life, and no matter what, it may limit you just a little but you still can achieve anything in life. God is awesome and as long as you put him first and believe you are already healed. I truly believe that I am healed because the word Isaiah 53:4-5 “By His Stripes We Are Healed.” I tell people, don’t feel sorry for me, I’m just going through. I am a Sickle Cell Warrior and as long as I live I will fight to the end and tell my story to be able to help someone else.
From Sickle Cell Disease Association of America:
Sickle cell disease is an inherited blood disorder that affects red blood cells. People with sickle cell disease have red blood cells that contain mostly hemoglobin* S, an abnormal type of hemoglobin. Sometimes these red blood cells become sickle-shaped (crescent shaped) and have difficulty passing through small blood vessels.
When sickle-shaped cells block small blood vessels, less blood can each that part of the body. Tissue that does not receive a normal blood flow eventually becomes damaged. This is what causes the complications of sickle cell disease. There is currently no universal cure for sickle cell disease.
Hemoglobin is the main substance of the red blood cell. It helps red blood cells carry oxygen from the air in our lungs to all parts of the body. Normal red blood cells contain hemoglobin A. Hemoglobin S and hemoglobin C are abnormal types of hemoglobin. Normal red blood cells are soft and round and can squeeze through tiny blood tubes (vessels). Normally, red blood cells live for about 120 days before new ones replace them.
People with sickle cell conditions make a different form of hemoglobin A called hemoglobin S (S stands for sickle). Red blood cells containing mostly hemoglobin S do not live as long as normal red blood cells (normally about 16 days). They also become stiff, distorted in shape and have difficulty passing through the body’s small blood vessels. When sickle-shaped cells block small blood vessels, less blood can reach that part of the body. Tissue that does not receive a normal blood flow eventually becomes damaged. To learn more, visit: www.sicklecelldisease.org