I am the fifth of six children, and my case is a spontaneous mutation.  I jokingly say I am a mutant!  It wasn’t until I was an adult that I met another person with NF.  Over the years I have learned so much about NF and consider myself blessed that I don’t have more NF related issues that I do have.

At birth I had a few café au lait spots, the pediatrician called them birth marks. Later when I was around 8. My mom took me to the pediatrician (a lady) for an earache. When she saw my café au lait spots and the freckling under my arms and told my mom that I had Neurofibromatosis. My mom’s response was I thought she had an ear infection!  The Dr.  took pictures of the café au lait spots and the freckling under my arm then sent me for an x-ray of my spine where they found a slight curve in my upper spine which continued to progress to about 33*. At 18 I had a spinal fusion of most of my upper spine T2-T10. Just the fusion, no hardware.

I didn’t walk until I was almost 2. Having ADHD I was not the best student in school and am still dealing with my ADHD as an adult.

I did my best to not let the fact that I have NF1 hold me back.  In high school I played Soccer, many times as a Goalie. Also did the Shot Put and discus on the Varsity track team. And competed one year on the Community College Track and Field team doing the Shot put, Discus and Javelin scoring enough points to get my Letter Jacket. After this is when I had my Spinal Fusion in the summer of 1979.  Spent 9 months in a body cast. Returned to college after 1 semester off, still in a body cast.  When cleared by my Ortho Dr I returned to compete on the Track and Field team doing field events, just the shot put and the javelin. Again, scoring enough points to earn my Letter Jacket.  

In 1982 I resumed playing soccer as an adult playing Goalie much of the time and continued to play until December 2016 when I was diagnosed with severe Dural Ectasia in my upper spine where part of my Fusion is. It was discovered when I had a chest X-Ray checking my lungs for Pneumonia.  I would have rather had pneumonia! 

I have hundreds of neurofibromas, most are covered by clothing.  The ones that were irritated by clothing or were in areas that could become problematic have been surgically removed.