My name is Sonnie Coulson John. I am 10 years old. I have sickle cell anemia commonly know as Sickle Cell Disease (SCD). I hate to use the word disease, because It is not contagious, it is an inherited blood disorder, which causes pain. It affects the red blood cells called hemoglobin in my body. You can only get sickle cell disease by receiving two sickle cell genes, one from each parent who carries a sickle cell gene.
Sometimes I do get crisis. The logo on this website shows my swollen hand at age one month old. I cannot remember because I was only a month old, but my parents told me that I cried a lot, because it causes me to have pain. I sometimes get sick at home and at school. I miss a lot of days from school due to my illness; in many cases, when I am in crisis, I ended up at the emergency room or admitted at the hospital. Now I understand my problems when I am having a crisis.
I get blood transfusion every four weeks, to help me feel better and stay healthy. When I get sick, I get tired and sleepy. I want to tell other children with sickle cell to drink plenty of water, juices, and no sodas or coffee. We (sickle cell patients) get dehydrated very quickly. Always carry a water bottle and drink plenty of water and always take frequent breaks or rest. Not drinking fluids can help damage our organs in our body. We have to avoid too much heat and cold weather, because that makes us dehydrate and our blood does not flow properly.
I am on a new breakthrough medication now. Thanks to medical research. It helps me stay healthy. I will like to have other sickle cell children to be my friends and write to me about their experiences with the illness. Please send me an e-Mail to sonniecj@coulsonsicklecell.org.
