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This section is a place to share stories about Living with Neurofibromatosis
Below are entries of those who have already shared their stories. We hope that you find their experiences helpful to your own situation.
You may also Help others by sharing your story.
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July 2008
- my lucky charms “NF1″ - by Charm - (Thu, Jul 31 2008)
i am 30 yrs old and i have NF1. This was started growing when i started my period age 12. And now I am still hoping that i will be cure.
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- neurofibromatosis stress and growth - by Jennifer - (Thu, Jul 24 2008)
i really feel bad because there is no cure totally for this disease but i believe i can be cure because i am a christian and i believe in miracles
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- NF1 and Me - by Lori - (Tue, Jul 22 2008)
Sometime’s I get so mad I curse NF I was diagnosed in the early 90’s at first I thought ok how bad can it be but boy after a few years it has gotten bad
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- NF 1 and pseudoarthosis (bowed Tibia) - by KP - (Mon, Jul 21 2008)
I was born with a bowed left tibia that my parents noticed at 3 months of age. By 8 months of age my leg was placed in a long plaster cast to protect it. It broke in a cast about 2 weeks after. I have had many operatins since infancy to strighten and mend it.. with this condition it never mends.
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- NF - by Eva - (Thu, Jul 17 2008)
I first found out I had NF when I was 16
I had a bowed left leg all my life
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- NF1 - by Judy - (Fri, Jul 11 2008)
My 5 year old grandson was recently diagnosed with NF1. He has many cafe au lait spots on his tummy & back and also a small tumor like swelling on his index finger which makes it appear distorted.
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- Neurofibromatosis - by SA - (Fri, Jul 11 2008)
HI I’M 26 YEARS OLD AND WAS DIAGNOSED WITH NEUROFIBROMATOSIS IN 2001. I WAS TOLD I HAD A TUMOR ON MY NECK. AFTER THE SURGERY THE DOCTOR TOLD ME HE WAS ONLY ABLE TO TAKE 1 TUMOR OFF.
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