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Hi! I was diagnosed with neurofibromatosis type 1 when I was 3 years old.  I am the only one in my family that has it. I’ve had two major surgeries, countless appointments, MRIs, horrible headaches, and struggles with schoolwork and friendships…all from having NF. It sucks, but it will not define me and it will…

My name is Rick. I wasn’t diagnosed with NF Type 1 until I was 32 years old. I had no idea about it or even  what neurofibromatosis was. I had been in the US Army for six years and they never diagnosed me with it. I got married the first year I was in the…

Growing up I always knew I was different.  I had spots all over my body. I actually thought for a while that I was part leopard.  I don’t remember how old I was when I learned I had Neurofibromatosis (NF), but I know it was sometime in elementary school. I come from a long line…

I am 64 years old with no prior neurofibromatosis  family history and none of my 6 siblings have NF, making me a genetic mutation. I did not develop any fibromas until my late teens / early 20’s. My  family doctor at the time (over 40 years ago) removed one, biopsied it, and simply said “nothing…

I have NF type 1. For the most part, my symptoms have been mild, but the most significant challenges I’ve had  include: optic glioma, several other large fibromas (including one in my throat that I’ve had to have surgically removed), and precocious puberty. My visual impairment has given me the most challenges. I received large…

Ana is 10 years old. She was diagnosed with neurofibromatosis type 2 when she was seven. Her genetic disorder was a result of a spontaneous mutation. It has been a long road for Ana, as she has had 34 tumors between her brain and spine and multiple surgeries. She has learning disabilities, right foot drop,…

Maverick is the first in his family to be diagnosed with NF1. He started showing symptoms at 2 months old. He has multiple café au lait spots, a larger head, he had bowed legs as a baby, and he has low muscle tone that requires physical therapy, occupational therapy, and speech therapy. He has issues…

Hi, my name is Jean. My son, Collin, was diagnosed with NF1 at the age of 1. He was ahealthy child at birth. I immediately noticed he slept much longer than his older sister did at thesame age. As he grew I noticed that he had a number of birthmarks. They were the color of…

Hi I’m Karissa, I’m 27 and I have NF1. My story may be a little long, but sometimes that’s the way it is with NF. It’s the disorder that for some just keeps on “giving” and for all the questions and concerns we have it seems like there are always more questions. First, I have…