Personal Stories
Although NF is a wide ranging disorder, each of us share a common bond? we are affected to some degree by the presence of NF in our lives. NF does not necessarily bring each of us severe complications, but it does bring each of us a measure of uncertainty. Whether we are an individual with NF, the parent of a child with NF, or someone who knows and cares about someone with NF, the sharing of information and support can be valuable. Each one of us has a unique life experience in living with NF which we may find beneficial to share. If you would like to share your story about life with NF, mild or complicated alike, the BCNF can provide the opportunity to do so by way of our website or newsletter.
Update on Tara…
Wow! I have not written about living with NF in a long time. When they asked me to update my situation and I saw my old photographs from ...
Tracy’s Story…
Like many others, neurofibromatosis was not a word my husband or I had ever heard of. However, the first term we needed to learn was pseudo ...
Tara presented this speech at the Jeans for Genes dinner & auction on May 23, 1998
Hi - my name is Tara Turley-Dean. I'm eleven years old - and I know a lot of words I shouldn't know. I'm going to tell them to you. Don't worry Mom - not those words! Neurofibromatosis. That's one word I wish I didn't know. Chromosome 17. Scoliosi ...
A Parent’s Perspective on Living with Neurofibromatosis
Once asked to offer my perspective of life with Neurofibromatosis (NF), I thought "that will be easy. Well, I quickly remembered it ...
5 year-old Noah was diagnosed with NF when he was only a few months old
Printed in the Globe and Mail, May 27th, 2003 and reproduced with author consent. Very few international donors gave to Canadians-those deemed ...
Liz, the mother of a child with NF1, shares her experience
Rebekah is our first born daughter. I remember that when I found out I was pregnant, I cried. I was not sure we were ready to be parents ...
Ivan’s Story…
Ivan has served on the BCNF Board of Directors, volunteered at many events? and serves up a mean spaghetti dinner! Here is his story: My name is Ivan Jun ...
Holly is an adult with NF and the mother of two children with NF…
I have neurofibromatosis (NF), type 1. When I was first diagnosed, in my early twenties, my doctor mentioned the words "elephant man d ...
To raise awareness of NF, Wendy writes about her sister Eva
May is Neurofibromatosis (NF) month and to raise awareness of this disease I wanted to write a story about my sister, Eva, who has NF. As I started to write t ...
12 year old Brendon was diagnosed with NF when 3 months old
My name is Brendon Pommier, I am 12 years old and I have NF. This is my story. I was born in Vancouver, but my family and I moved to Kelowna when I wa ...