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Sickle Cell Anemia Amanda Turner and Sarah Kivett

My name is Katherine and I have been battling Sickle Cell Anemia for 15 years now. It has been hard on myself, family, and friends. I can still go out and do things but I am limited. It is important for me to adopt a healthy lifestyle, take steps to prevent and control complications, and learn ways to cope with pain. My parents, David and Lisa both were carriers of the disease and it was passed down to me. They don’t have to deal with the effects of sickle cell because they are only carriers of it. They are supportive but blame themselves everyday for giving me this horrible disease.

With this disease I have a hard time connecting with others because I know I am different from everyone else.  Neither of my two sisters have this disease and cannot understand the hardships. I have spent countless weekends at hospital while I know the other teenagers are out partying. The mental effects spread to my family and friends also. They hate to see me depressed all the time. I know I am blessed because other people are far off worse than I am.

Even with this disease, I have a high life expectancy. Males struggle with sickle cell more, so I am lucky I am a girl. Some symptoms are blood clots, which cause pain and are life-threatening, and I am more prone to illnesses like pneumonia. The main treatment for sickle cell is a bone marrow transplant, however, this only works for a small group of people. We tried this for myself, and it didn’t work. Severe sickle cell anemia can be treated with a medicine called hydroxyurea. This medicine causes your body to make fetal hemoglobin, the same type of blood a newborn has. This can help prevent red blood cells from sickling and improves anemia. This disease is a gene mutation that occurs on the 11th chromosome. A treatment center that I have visited many times is Center of Excellence in Sickle Cell Disease at Boston University. They use arginine as a treatment as well. They have helped me get through a lot. They gave me the medicine hydroxyurea, which has made the symptoms less painful for me.

 Right now, I am feeling the best I have ever been. I am healthy but still cautious of all the symptoms and complications. I am participating in many activities and have a stable relationship with my family and friends.      sicklecellsickle-cell1