My name is Stephanie; I am 23 years old and at the age of 4 was diagnosed with NF1. I have no prior family history, making mine a spontaneous mutation. NF hasn’t really stopped me from doing anything in my life; I try to think, I can’t change it so why dwell on it. I often think I am rather lucky to have such a mild case, even though I have my days where I just hate the fact that I have been dealt with this disorder.

Living with Neurofibromatosis has had many challenges throughout the years. I have had to go to speech pathology and have had many years of testing for learning disabilities (all through school). Two years ago, while attending college, I was diagnosed with a reading, writing and math disability. Because I was diagnosed so late with these, I had great difficulty throughout school, and at times was placed on an adaptive learning program. This led me to be teased many times throughout school, from the bump on my lip to the obvious difficulties I was having in school. This hasn’t stopped me though; I graduated on time and even received a small scholarship at graduation after being nominated from a few of my teachers. After high school I began to study to be a disability support worker but have decided that I want to become an Educational Assistant for disabled children in the school system.

To date I have had four surgeries on my lip to remove an NF lump. Each time this lump has come back. I have also had a major surgery to remove a large NF tumour in my leg that was between the muscles. So far there has been no sign of this one coming back, and although at times I don’t have feeling where this was removed, its way better than the pain it was causing before by pushing on the nerve.
The first time I ever heard of anyone else with NF was while awaiting an annual brain MRI. There was another family there and we learned their son Seth also had NF. We lost touch for a couple years but soon after hearing Seth’s mom Tracy had started a support group for NF, we were quick to reunite.

I have found great support through the people I have met in the Manitoba Neurofibromatosis support group. The Gregorash family have been a great blessing to get to know and through them I have had the opportunity to meet many other families and friends living with NF. Now we are able to discuss which doctors are knowledgeable about NF and can compare how to overcome different NF issues that can arise.

Knowing there is access to support is a blessing and never lets you feel alone.