http://neurofibromatosis.forumotion.net/what-is-your-nf-story-f2/-t1.htm Want to share your story? Please do it here. Sat, 30 Aug 2008 16:16:01 GMT 10 http://i144.photobucket.com/albums/r183/paranormalsammy/logo-2.jpg http://neurofibromatosis.forumotion.net/what-is-your-nf-story-f2/-t1.htm http://neurofibromatosis.forumotion.net/what-is-your-nf-story-f2/sammy-s-story-t12.htm SammyHolden Well... I have NF type 1 which was passed onto me by my father, and my life so far with NF has been one hell of a journey as I'm sure it has for all of you. I was diagnosed from birth and they noticed straight away a problem with my left leg, (I'm not a 100% what it was, I'd have to ask my mum and get back to you) They predicted my leg would break when I was 6, unfortunatly at 18months it broke. I had around 30+ operations on my leg none of which where successful, (One operation included having ... What is your NF story? Fri, 29 Aug 2008 20:40:38 GMT http://neurofibromatosis.forumotion.net/what-is-your-nf-story-f2/sammy-s-story-t12.htm#17 http://neurofibromatosis.forumotion.net/what-is-your-nf-story-f2/sammy-s-story-t12.htm http://neurofibromatosis.forumotion.net/what-is-your-nf-story-f2/wa1lsh-s-story-t16.htm wa1lsh I am going to attempt to write my NF story. As time goes on I am sure it will be added too. I am going to write about my 50 years of knowing that I have had NF. My parents and I first learned that I had NF in 1957. It was not called NF at that time it was called Von Recklinghausen’s disease. It was that year that I had my first tumor removed. It was on my collar bone. Over the years I would several have more remove from other parts of my body. The doctors told us only to have them removed ... What is your NF story? Sat, 30 Aug 2008 16:16:01 GMT http://neurofibromatosis.forumotion.net/what-is-your-nf-story-f2/wa1lsh-s-story-t16.htm#27 http://neurofibromatosis.forumotion.net/what-is-your-nf-story-f2/wa1lsh-s-story-t16.htm http://neurofibromatosis.forumotion.net/what-is-your-nf-story-f2/donnalynn-s-story-t11.htm DonnaLynn I don't have much of one really. We are not sure where my NF came from. The only other person in my family that had it was my son Brandon. He passed away in 2001 when he was 17 from cancer related NF. He first had to have his right leg including his hip amputated. The tumor was 19 cm big, that was in Jan 2000.the tumor was 19 cm big, that was the size of his head when he was born. What is your NF story? Fri, 29 Aug 2008 13:28:26 GMT http://neurofibromatosis.forumotion.net/what-is-your-nf-story-f2/donnalynn-s-story-t11.htm#16 http://neurofibromatosis.forumotion.net/what-is-your-nf-story-f2/donnalynn-s-story-t11.htm