Suzanne’s Story
While life teaches us that the essence is outside the body, daily living tells me that “I am a body.”
NF Stories
Everybody diagnosed with Neurofibromatosis has a different story to tell. We hope that the stories below will inspire you and provide you with a better understanding of the courage and determination shared by those in Canada’s NF community and to put a face to this sometimes misunderstood disorder.
Do you have a personal story to share? We’d love to hear it! Please contact us and your story could appear here.
Stephanie, 20 years old
The most painful part about having NF is never knowing what will come of an NF tumour or where you will find the next one.
Nola, 31 years old
I always feel self conscious and worry about the future. What is important to me is that I try to get better with this and not pass my insecurities on to my son who also has NF, as I want to be a good advocate for him.
Corey, 36 years old
Emotionally, NF has been difficult for me to talk about, but I find talking with other people with NF does help. Peer support is very important. It is difficult not knowing how my symptoms will progress as I grow older. My hope is for a cure or for new ways of alleviating or slowing down the progression of NF symptoms.
Jackson, 15 months old
Jackson is a happy toddler who was diagnosed at 6 months with NF1. Jackson is part of the 50% of NF sufferers who have inherited the disorder genetically. Every year, one in every 3,000 to 4,000 babies will be diagnosed like Jackson, with NF.
Seth, 7 years old
I don’t like the pain or the bumps or the IV every 3-4 months. I also don’t like how hard it is to learn to ride my bike. Sometimes I feel that I cry too much and that I’m different from the other kids.
Lyndon, 19 years old
A challenge I face is the fact that lots of people think that I’ve been in a fight because of my eye when the fact is that it’s a tumour. People always judge me before they know what it really is.