Make Masto Known!

The story of Sophia

I hear all these wonderful stories about kids and adults with rare diseases, and how they function in life. I hear about rare disease day, the 29 of February, and usually think to myself, “I have a rare disease too!” It’s not a disease that makes normal activities harder for me, or makes me not think like others. In fact, I hardly think about it myself! Pediatric Mastocytosis is caused by to many mast cells in the body. It results in “spots” that appear on the skin. Really the only thing I have to look out for are my allergies. They include, certain drugs/medications and alcohol. My spots also would “flare” and I would get flustered if something in or outside my body was irritating me. My spots acted like a warning for when I wasn’t feeling well, or was getting to worked up over something. I went about my day-to-day activities and acted like any child should, energetic, loud, and curious. Not only was I allergic to alcohol and some drugs, I was also allergic to stinging and certain biting insects. It was hard for me not to be afraid to go outside in the summer, and spent the school recesses inside doing homework or coloring. In fourth grade I went to Mexico with my family and found I was also allergic to red food coloring. I had blisters in a ring around my lips. People used to look at me and ask if I had chicken pox. I usually laugh and explain about my disease. Not only was I asked about my Masto, But I was also made fun of. Through preschool to third grade, people would call me alien and “cheetah girl.” I took it as a compliment, as I loved to run, and would make it into something funny. Time and time again I remember the times where I would finally get bored of it and walk away. Recently, I started thinking about it again. As I grew older and got tanner, my spots started to fade. As a child I was quite disappointed. Now I look back through baby books and see how different I am now. It saddens me that I am not noticed. I don’t want the attention, but I do want people to know about diseases they probably had never even known existed. After all, how interesting would the world be if we were all the same…?