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Remembering Uncle Johnnie

Posted: 09/14/2012 8:40 am

By Bree Person

My name is Bree Person, I have sickle-cell anemia, and I've had it since the day I was born -- 17 years ago. Despite what some of my friends think, sickle cell is not a disease you can get rid of! It's a genetic disease where red blood cells, which are normally shaped like discs, form a sickle, or crescent shape. Almost everyone who has sickle cell has painful episodes, called crises, that can last from hours to days. September is Sickle Cell Awareness Month and I thought I'd take the time to remember my uncle.

Uncle Jhonnie was a very caring and hilarious person. He would make me laugh with any joke he said. Even when he was sick, lying in his hospital bed, he'd say jokingly, "I don't need to be here." Sickle cell is something we have in common, and he would often come visit me when I was in the hospital and joke about ways to help me sneak out. Sometimes he was actually a patient during those visits to my room and would tell me that I got him sick. I would laugh and say, "Yeah, okay Uncle Jhonnie." He played a big part in helping me through those crises.

He also taught me a lot. Like I said, Uncle Jhonnie was funny, but when it came to actual treatment in the hospital, he was stern. He would demand the medicine he needed to get better. He wanted the best nurses putting a needle in his arm for his I.V. It took me a while to see why that was important.

One time I found myself sitting on a hospital bed with three nurses surrounding me trying over and over to give me my IV. It was painful but it helped me to think back on how much my uncle would put up with and what he taught me. I snatched my arm away and said, "I don't want anymore needles!" They tried to get my arm back, but I spoke even louder and jerked away from them to show that this was enough. I knew I had to stand up for myself, especially when it came to my well being. They brought in a doctor to give me my needle, and that was that -- just one of life's lessons he taught me.

In June 2008, my uncle passed away from the disease. Seeing him go through the same pains as me and watching him fight to the end gives me strength to overcome my pain today. I learned to be patient with people who do not know about the disease. He has been a role model for me and still is.

Over the years I've been faced with many challenges that have affected my school and social life. In honor of Uncle Jhonnie and Sickle Cell Awareness Month I want to share five things any teenager living with sickle cell should know! Here are some ways I've learned to cope:

1. Always take the easier route to your destination. Instead of walking 10 blocks, if possible take the train or bus. And if none of the above are available... walk slow! If you don't, there's a big chance you might get sick.

2. Always have a best friend who knows about your disease. This person should know all the complications and side effects that come with having sickle cell. This is important because if something should happen to you, he/she will be there to assist and comfort you. I have a best friend named Danielle and she helps me with explaining it to teachers and understanding why I might be absent from school.

3. Always keep back-up medication with you. You know what helps you to recover and most of the time medicine from the store doesn't cut it. Always be prepared. There were times when I left my meds at home and was in pain and no store had my prescribed medication, so I had to go straight home and take my medication and relax for the rest of the day.

4. Ask for extra work from your teachers in case you get into a crisis. If you're ahead, coming back to school after spending a few days in the hospital won't leave you behind when it comes to class and homework. For me, it was difficult at first to do extra work in case I would be out, but in the end it paid off. Not only did I get what I needed done, my teacher saw that I was responsible enough to ask for more work.

5. Know your limit! If you can't do something, it's okay to sit down. I've had times where I thought I needed to be the better person when it comes to sports, pushed myself too hard and found myself in the hospital later that day.

Want to learn more about sickle cell? Head over to the Sickle Cell Thalassemia Patients Network and become AWARE!

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