Katie-15 years old
My name is Katie. I am 15 ½ years old and I live in Utah. I have a rare disease called Mastocytosis. I was diagnosed when I was 3 months old. There are different kinds of Mastocytosis. The kind that I have is Cutaneous Mastocytosis, which is also known as Urticaria Pigmentosa.
The cause of Mastocytosis remains unknown. People with the disease have an overabundance of mast cells. These cells are found normally within every tissue in the body. They contain chemicals that are released into our systems to perform various duties.
In Mastocytosis, the excessive number of mast cells release more of these chemicals than the body needs. The symptoms of Mastocytosis are caused by the excessive amounts of chemicals interacting with the body tissue. Pediatric Mastocytosis can take several forms, with symptoms varying from mild to severe. This disease effects people in different ways such as size, shape, color of spots, symptoms, triggers, and treatments. There is no cure.
With the type of Mastocytosis that I have, I have spots all over my body. From the top of my head to the bottom of my feet. Some spots are small and some are larger. The color of my spots range from dark brown to light brown to red and light red. Most of the time my face is very red. People always think I have chicken pox. I always get comments and stares. Sometimes my face gets purple/bluish colors. I also get this on my arms and legs. I get fevers out of the blue for no reason. Sometimes it goes away fast but other times it can last up to 3 days. With this also comes with headaches. Extreme cold and heat are a huge trigger for me. When the weather changes, I get sick. When this happens I know have to start taking my medicine. I can always tell the beginning of me getting sick because my face turns beat red and start to flush and the spots on my face get raised. That means that the histamine level in my body as gone up and time to take my meds. Extreme physical activity is hard for to do because I can get overheated really fast. If I get too over heated or I get too cold, I can go into anaphylactic shock or respiratory arrest. Some foods make my Masto worse, others I simply cannot have, like chocolate, berries, and nuts. There is a huge list of medicine that I am allergic to because of Masto. Going to the dentist or having surgery is not easy because I have to be on certain medicine for about a week before even a filling or surgery is done. I am so thankful I have a really good doctor that is at Primary Children’s Hospital.
I am a sophomore in High School. I am in women’s choir and varsity art club. This year I will be going to Disneyland for choir tour. I like to hang out with my friends, bake, playing the piano, clarinet, and guitar. Someday I want to have my own bakery. I live with my Mom, Dad, and my brother who is in college.