Growing up I hated my café au lait spots. There was one in particular located above my lip that was especially noticeable. I will never forget the day my uncle made a comment that I had dirt/food and needed to wash it off. I guess he just forgot about my birthmark, but I wanted to cry all the same - it doesn't make it easier when it's your own family.
As my café au lait spots faded they seemed to be replaced by skin tumors. I had always felt NF took away from beauty, which is why I hate it so much. Sad to think that it is not the pain it causes, but how it makes me look on the outside and this is still probably the most difficult of things to overcome.
For the majority of my childhood my parents just did not allow me to play organized sports because they feared I would break my leg, due to a tumor in the bone. After the surgery to remove the bone tumor I was allowed to play organized sports, including softball, in high school. Now I am able to do all the sports I enjoy and take part in bike riding, snowshoeing and cross country skiing regularly.
I have a very loving family. My mom and dad always made me feel that I could accomplish anything I set my mind to. My father once told me that I was the child he was least worried about, because he knew I was a fighter and no matter what obstacles were in my way I would battle through it and come out stronger in the end. I believe that this fighter attitude is because of NF. Yes, every once in awhile, NF reveals its ugly head and I need to have a tumor removed. It is always just a minor setback and sometimes can be very scary, but I try to remember that it could be worse and am grateful that these tumors are not the invasive type.
I decided to become a teacher because I always enjoyed playing school as a child and had a love for mathematics. My career is very rewarding as I make a difference in the lives of the students I teach. I also have a very loving husband and two beautiful, intelligent daughters who are both pursuing graduate school.
My advice to people with NF is simple: do not let it bring you down. Rise above it. You are beautiful. You can do anything in life you want to. It will challenge you at times. It will even scare you, but in the end you have one life and all you can do is enjoy it.
Susan Giza, 48 years old, lives with neurofibromatosis type 1 (NF1). She is a high school geometry teacher and lives in Wurtsboro, NY with her family.