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Living with Neurofibromatosis

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living with nf
by: desiree' on Fri, Jan 23 2009
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i have been living wth nf for abput five years. my mother and grandmother have it. i havent really been taunted or anything about it cuz noone really knows. i have 2 brain tumors and i had spinal surgery twice i had 3 tumors on my spine. its been hell but im getin threw it. im only 16 and i dont worry about nf cuz ima live my life with or without it.

i have to much life to live. i love myself. i like to think nf is a disorder not a disease. i dont care what people thinks about me if they dont like me cuz of what i have the forget them…i live my life day by day.. i just like to educate people on what i have. and to let them know that you cant catch nf by touching or anything… the hardest thing about going threw it is going threw it by myself cuz my mother dont like to talk about it soo i talk to the lord and and he lets me know that everything is gone be okay and i trust in him.
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  1. Tue, Apr 14 2009
    hi. i was wondering what type of nf you have i have schwannomatosis and i've had 11 spinal operations mine started when i was 15 which is average for ...Read

January 2009

  • nf - by kerry - (Tue, Jan 27 2009)
    i have nf since i was little it can be very uncomfortable to live with as well as people bulling you about it. [more..]
  • living with nf - by desiree' - (Fri, Jan 23 2009)
    i have been living wth nf for abput five years. [more..]
  • my family story - by ssb - (Fri, Jan 16 2009)
    how hard must it be to hear that you will not get old before your conditions kills you, my uncle was a child when he found about nf and has been great stoke threw the pickin on and teasin as he gets tumors by his nose. [more..]

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