My name is Mamie, I am 16 years old and was diagnosed with a rare disease called HLH this past October 2018, but I have been sick sine December 2017. I was first diagnosed with Juvenile Idiopathic Arthritis (JIA)and at the time it really put a halt to my life. Prior to being sick I was really involved in school, I worked hard and had straight A’s. My plan was get into the medical field once I graduated and go to school out of state. I was also involved in dance and planned to join the cheer and basketball teams in school. Due to extreme body aches and pain I was forced to quit basketball and unable to try out for cheer. My focus turned to school work and I ended the year strong academically but my health continued to decline even more over the summer.
In the Fall I became so sick and looked like a skeleton. I was rushed to the hospital where I spent two weeks and was diagnosed with Hemophagocytic lymphohistiocytosis (HLH) which is an aggressive syndrome of excessive immune activation. I’ve been stuck in the hospital for long periods where things have been up and down. I look forward to starting school again and seeing my friends. My life has been on hold for too long. I am excited to do all the things I want to do in the future.