Category: NF Stories

We had moved from a quiet neighborhood to a go, go, go city which meant switching all our providers. When we got to our new location, my son went to his 9 month checkup. At that checkup, the new doctor said, “these brown spots look like café au lait spots”. I said, “huh?” I have…

I was diagnosed with neurofibromatosis type one at birth. It was caused by spontaneous mutation. I was born with glaucoma and had my first major surgery at 5 days old.  I had a goniotomy and it didn’t take.  So at 5 months old, I had to have a trabeculectomy to try to relieve the intraocular…

I am 67 years old and I have NF2. When I was 45, I had my first acoustic neuroma (now known as vestibular schwannoma) surgically removed and my second one removed 10 years later at age 55. I had a cochlear implant placed after my second surgery, but it has never worked. The surgeries to…

I have been running competitively for almost 2 years and love it. It helps me relax, great stress reliever gave me a new goal to accomplish. That is to run a marathon someday with my little brother and raise awareness for NF.  I never really was a runner when I was younger mostly loved soccer,…

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…