Neurofibromatosis

[lexy]

I am a thirty year old young man with neurofibromatosis all over my body, has been like for quite a long time (since i was a little boy but didn't get to know what it was untill i grew older), and has really reall affected me in so many ways both physically and psychologically, i cannot go for a swim with friends or even take off my clothes where there are people around, i feel as if i may never get to meetsomeone that really understands my plight and be ready to accept me the way i am, it hasn't been too easy for me, is there still hope of a cure for me ?
Tochukwu from Nigeria

[nelson312M79GG]

Hi! Tochukwu
My name is Rick and i have NF1. I like you to know that there is hope. I notice bumps on me when i was in 10th grade back in 1979. Doctor back then did't know anything about nf1 from my area.Right now they still don't no. I am all so cover from head to toe now and some of them are very large that need to be removed. I have one remove from my eye lid,leg,and i had surgery on my neck where my bone was defromed and had to be replaced. But throuth it all there is hope, God bless me with a wife. We dated for one year and on dec 11, 2003 we were marryed. She is so sweet to me and she won't to have kids even at our age, but i did't won't to. Right now i am 44 and i just keep my trust in God. So what way this nf lead you rather it be good our bad just keep the faith. And i am sure that you will meet that spical person. I was so nevous to tell her that i had nf, but when i did she sead i love you. So you see just keep your eye on God and let him lead you and you wll alright.

Rick
if you would like talk e-mail me
stone@hiwaay.net

[lostone7]

in my heart i believe there is hope i'm in the same shoes your in i would love to go swimming my self i live in Floroda and it gets pretty hot here and i wear long sleves year aroud because i dont want people to see my skin i dont want to see them stare at me.... but i know one day in my heart 1 day i will be cured so i know there is hope for you and myself