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My WebMD: Living a Normal Life With Sickle Cell Anemia
Amanda Jackson tells her story of growing up with this blood disorder and then learning to help others.
Reviewed by
Michael W. Smith, MD
My parents first knew something was wrong with me when I was 3 months old. I was constantly in pain, constantly crying. They thought I had rheumatic fever or polio. The townspeople would come over and sit by my bed and pray.
After seeing local doctors, I was diagnosed with sickle cell anemia when I was 6. It's a disease that makes your red blood cells grow in a crescent shape, which means they can block blood vessels and stop oxygen from getting to the cells. That causes pain and anemia and can hurt your muscles, joints, bones, and organs.
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The symptoms of hemophilia include: In some cases, lengthy bleeding after circumcision Excessive bruising Swollen, painful joints Swollen, tender muscles Excessive bleeding from the gums, tongue, or mouth following injury (seen particularly in infants and toddlers) Severe bleeding after tooth extractions or other invasive dental procedures Severe bleeding after injuries or operations
Read the Understanding Hemophilia -- Symptoms article > >
They told my mother it was a fatal disease (even though, as I later learned, it's not and treatment is available), and that I would only live to be 10. My mother just said, "Lord, let my little girl live." It was very challenging for my parents. They had other children they also had to take care of. (Eventually they had 16 children altogether.)
Sickle Cell Crises
When I had an attack, what we call a crisis, the pain was so intense my arms and legs would draw up. They couldn't stretch. Everything was hurting. I had crises about every three months; I could stay home on bed rest, but if the pain was too much, my parents would take me to the hospital so I could get painkillers.
I didn't want to be in the hospital, but I saw it as something I had to do to get back to school. As I got older, the attacks happened less often, maybe once a year. But my mother raised me to be normal, not to say, "Oh, I have this condition" or "I'm sick." Still, I didn't go to college. I was tired of school, tired of being absent.
Instead, I went to work at Baxter Laboratory, which was in our town. They were so good to me. When I had to go to the hospital, they would drive me and send me flowers. And then I ended up getting married, moving to Chicago, and having two children -- despite the fact that my doctor said I could never get pregnant. I just always prayed that I would be blessed with having a normal life, and I did.
Controlling Sickle Cell Anemia
Today, I'm 61, have seven grandchildren, and my own children are 34 and 36. They carry the gene for sickle cell anemia but don't have the disease. I still have crises about three or four times a year, but I watch my diet -- I don't eat a lot of meat or sugar. And I try not to overdo things. If I get too tired or anxious, I have a crisis. It's like tiptoeing around a monster and not wanting to alert it.
But I'm pretty active; I walk a lot. I lead women's retreats and conventions for churches. And I talk a lot to teens with sickle cell. I try to inspire them to have a life. I tell them not to worry about what they've missed, just look for what's coming next. I never gave up. I had no self-pity.
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