I dedicate this page to my mother who had NF (but died of ovarian cancer in 2006), my brother who had NF, and died in 1989 of NF related cancer, and my father who lost a young son to cancer. Although there are many pages on Facebook related to Neurofibromatosis, I find that all of them are "based" abroad. This page is for EVERYONE with Neurofibromatosis or people related to someone with this diso
rder; or even for those who just want to find out more about NF. People who can exchange stories and experiences. People who are not aware that their neighbor 'down the road' is going through the same stuff as themselves. I have a very personal 'relationship' with NF. I inherited NF from my mother and so did my brother, who died at the age of 18 of NF related cancer (I was only 15 and my sister, 16). My sister is lucky enough not to have inherited this gene, and so is my beautiful son. I say thanks for that, every day. I remember that I was curious from a very young age, about the hundreds little bumps that mom had all over her body; always asking her if I would get those too. I remember her sad smile, telling me that she didn't know. Many years on, and I don't have those little bumps everywhere, no. Not very visible ones anyway. Mine grows inside, where you can't see them. Last year I was diagnosed with a MPNST (malignant peripheral nerve sheath tumor). The diagnosis came after routine surgery to remove a rather large and rather painful bump on my left hand. I had six weeks of radiation treatment for that tumor, but because they didn't know if there were any clear margins after the tumor removal, the oncologist couldn't do much more. A PET scan came out clear though, so we were all relieved. A few months ago, I started having pains in that arm and hand again; and we are now back to scans and stuff to find out more, and to see what to do. This is my story, or part of it and I will share with you as we go along; BUT PLEASE feel free to add your story on our wall too. I would like for the NF community in South Africa to unite and exchange stories, experiences and support.
