Real Stories

Neurofibromatosis affects everyone differently. Whether you have NF1 or NF2, are a parent, a teen, a relative. or a friend of someone with NF, your experience is unique. However, it can be very helpful to read the accounts of how others have dealt with the disorder. These are stories from real people that we hope will inspire and encourage you.


  • To some people, neurofibromatosis is a curse. It’s a disorder that causes painful tumors, deformities and life threatening illnesses. For me though, it’s something that has made me into a better person, and it’s something that I am beginning to appreciate. I am the only person in my family living with NF, meaning I was […]

  • My name is Elena. I was diagnosed with NF at the age of 7. I found out when I went to the BC’s children hospital in order to have a tumor removed from leg I had broken earlier that year. At this time I was only diagnosed with NF and the tumor was not removed. […]

  • Jesse is a vibrant young 5 year old boy who as well as having NF (passed on by his father Chris) was diagnosed in November of 2009 with type 1 diabetes and has multiple insulin injections daily. When he was 2 years old there was a neurofibroma discovered on his optic nerve. He makes a […]

  • I found out I had NF1 when I was 14 years old. This happened only because I developed a few strange lumps under my skin on my forehead, one doctor thought it may be fatty tissue, and another doctor thought he would remove them and just to be sure. 16 years, and 6 surgies later […]

  • My name is John, and I have Neurofibromatosis – Type 1. At an early age my mother knew there was something different about me. My family doctor knew I had NF but did not say anything because “nothing could be done about it”. Another doctor formally diagnosed me in 1987. Neurofibromatosis was a scary and […]

  • I was diagnosed with NF1 in 1962 when I was six. Prior to that, I had yearly visits to the cancer clinic at University Hospital in Saskatoon. My mom and the doctors were concerned about the tumour growing on the left side of my nose. Mom suspected that the forceps used in my delivery were […]