Having sickle-cell disease puts me at higher risk of getting dangerous infections, bouts of pain and stroke. But by learning how to manage my triggers, I am able to live my life fully.
I have to a admit that when I was younger I was embarrassed to tell anyone that I had sickle-cell disease (SCD). I thought people would look at me like, What’s wrong with her? But it seems the older I get the more open I am about it. I have even talked to large groups about SCD with my mom and brother. I’ve learned to be comfortable with myself and be more confident. I’m no longer sad that I have this disease. I’m not disabled. I can still do what I want to do in life. I’m not hiding from SCD anymore. I’m facing it.
How many times have I been hospitalized? Maybe more than 100 times since I was a child, too many to count. I was diagnosed with SCD right after I was born, and I was in and out of the hospital from complications due to the disease for most of my childhood: Myspleen was removed when I was 4, along with my appendix; my nose has been cauterized multiple times to stop my constant nosebleeds. I’ve been hospitalized for chest pains, pneumonia, you name it. And I’ve undergone about 15 blood transfusions—because whenever I have a routine procedure that might cause a little bleeding, like having my wisdom teeth pulled, the doctors need to make sure my blood count doesn’t get too low.
As a child I always wanted to do the things my friends were doing. But being sick all the time and having SCD prevented me from participating in a lot of activities because they would cause a pain crisis. That’s when my body, particularly my arms and legs, would ache. It’s hard to describe the pain—it’s not like a muscle strain or an ache due to tension. This pain is deep, like down to your bones. Sometimes I would be hospitalized for five days just from the pain. I could barely move. I wouldn’t be able to walk or stand and I’d be very weak and dizzy. If I played a sport or a game with my friends, I’d have to take frequent water breaks or sit out for a while to regain my energy.
Sometimes I wouldn’t know exactly what triggered an episode, but as I got older I began to realize that cold, moist air would set off the illness. If I wasn’t dressed properly when I went outside in that kind of weather, I would get achy. I also began to realize that stress and upset could cause a pain episode as well. Maybe I wouldn’t feel the pain the next day, but a week later I would start getting sick.
My doctors would give me ibuprofen and morphine to take at home, but sometimes it got so bad that even the morphine wouldn’t work and I’d have to be readmitted.
As I got older, I started to get a little better and didn’t have as many pain crises. But during my senior year in high school, I had one of the worst episodes ever. It began as a simple sore throat that eventually turned into a strep infection. The pain medication that the doctors prescribed for the strep contained steroids that affected my immune system and triggered another SCD crisis. I got a high fever and my entire body hurt so much that I couldn’t move. So the next morning, the morning of my prom, I was hospitalized for another blood transfusion. I remember crying because I was so upset and frustrated. This was supposed to have been my best year ever. I should have been going to the prom that night, not lying in a hospital bed. I ended up being hospitalized for nearly three weeks. I was released right before my high school graduation.
After that episode, my doctors put me on hydroxyurea, a chemotherapy medication that helps block the sickling action of red blood cells. My first year on the medication, which was also my freshman year of college, the medication didn’t seem to be working because I was still having pain and feeling tired. But gradually I started regaining my energy and health. That is, until 2011, when I needed to have my tonsils removed. The procedure caused me to have another pain crisis and I was briefly hospitalized. Thankfully, I have not had to stay in the hospital since then—almost a year and half ago. Yes, I needed a blood transfusion before having my wisdom teeth removed last year, but at least I didn’t have to be hospitalized for it. The hydroxyurea has really helped. I take 1,500 milligrams every night and I have so much energy now. The medication builds your cell count so that you have more stamina. I can do more things: I go to school, I have a full-time job at a day care and as ananny, and I even took ballet classes for a while—which I had been afraid to do when I was younger.
My parents are carriers of the sickle-cell trait, and out of their four kids, my brother and I have the disease and my two sisters only have the trait. So when I’m ready to have children, I have to make sure that my mate doesn’t have the disease—otherwise, my kids will definitely be born with it. Even if he has the trait, there is a 75 percent chance my children will have SCD, and I don’t want to take that risk. I don’t want my children to go through what I had to go through.
These days, at age 21, I’m doing really well. My bones still ache every now and then, especially when it’s cold, but I know to dress properly on those days. I try to keep active, too. My schedule doesn’t allow me to take ballet classes right now, but I run when I can. Running gives me even more energy, and as long as I pace myself and don’t overdo it, I’m okay.
I’m finishing up my junior year at the Community College of Philadelphia and will head to Temple University this fall for my senior year and to obtain my bachelor’s degree in psychology. I’d like to become a child life specialist at the Children’s Hospital of Philadelphia. Those are the people you find in the children’s playroom or music room at the hospital who do activities with the kids. When I was in and out of the hospital as a child, they were the ones who made me feel better and made my hospital stay a lot easier. They took my mind off having SCD, and that’s what I’d like to do for sick children as well.
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