I am a 67 year old widow with NEUROFIBROMATOSIS
I have 4 children of which 2 also have NF. Maybe I should back up a little.
When I was born my Mother gave me up. I never really knew why. My father's parents raised me. When I was 8yrs. old my Grandfather died. My father came home from the war and kind of took over raising me as my Grandmother could no longer do it. I never had anyone to tell me what was happening to me with these marks all over me.But at that time there was little known about NF at least where I lived up north. I spent 2 yrs in a boarding school where I was shunned by the other girls because of the funny marks on my body, as I got older the marks got worse. I have worked from a very early age first to support myself as my father was not around much. Then to help my husband support our family. 
There is not a day of my life that goes by that I do not feel guilt for passing this on to my children.It was not until after I had my fourth child (my daughter) that I knew what I had. The Dr'S always told me they were birth marks not to worry about them. It was never talked about in the home as I did not know what to say about. I lived a very secluded life not wanting to go out for fear of the children being made fun of because of their mother. I was very lucky to have had the love and support of my husband and my children who gave me unconditional love. I was scared and the lack of knowledge with the Medical proffesion did not help. Since the formation of the NF Society in Toronto my life changed so much. I no longer walk down the street with my head down or sit in a Restraunt with my back to people as I was told once that it turned their stomach to eat across from me. Because of a very brave woman keeping a promise to her dead sister, the NF Society was formed. There for the first time I met other people like myself. With the exception of my children I had never met another person with NF.
I want to thank my children for their love and support and a special thanks to my two children who have NF they have never judged me or condemed me. My Daughter along with another young lady who has a son with NF have started a support group in our home city. Their hope is to reach other people who might have NF and are looking for a place to go and meet with other NF people. My wish is that one day NF will be a household word so parents can teach their children not to tease or make fun of a child at school who has NF. Also I would like every person in the Medical Proffession to know what NF is so we will be treated with respect whether it is a Doctor or a x-ray tech. At this time I would like to thank the many people who have been my friend over the years.
Thank you for reading this.
We are sad to announce that Margaret passed away from breast cancer in 2009.
