Neurofibromatosis

hi i have nf1 and im looking to make as many friends as possible with this disorder, my daghter also has nf1, id love to make friends with any1 world wide with this, as its gud to talk to some1 who knows wot im going thru and wot ive been thru, plz feel free to send me a private message and i will reply to every person who leaves a message, if u want to become my msn friend just leave ur address and i will add u straight away bye 4 now xxx

hey, i have this too..im 23 & have a few of the fibromas,small at this stage...but do u konw if they grow bigger or just more of them with age?I heard they can grow more/bigger when u go through hormoneal changes,like pregnancy or menopause.
Also i have the 'deformity'(HATE that word) from my right knee down&foot.h8 the fact that summer is coming up,winter nobody knows & i hide behind it with pants, but TRYING to have the courage and grace of god to use it for his glory, so hard, SO SO hard.

This brought tears to my eyes.
I have NF1 and I have always felt alone.
No else can really understand what I go through day to day.
The pain, the tremors and more.
Thank you for sharing this.
May the LORD bless you.

god bless ..may god help u always

yo tambien tengo esta enfermedad.
¿Que habremos hecho para merecernos esto.
Dios no existe.

I'm French and I have a Neurofibromatosis. Maybe you know me: you can read my NF poem on internet "The Naughty Little Toad" Your video explain very well. Congratulation Kind regards Francis "The naughty Little Toad

i don't have nf, but one of my online friends has it, and i know it's hard for her. she's been through several mris and scans. i don't know how any of the nf victims feel, because i don't have it, but i wish you all the best, and hope that one day--and soon--there is a cure for nf.

I try not to think about it.

thanks NF Thailand

yeah i have nf and i dont have any facial deformities so thankfully i dont have to deal with what you all have to go through every day. I feel bad for you all and words cant express what i feel when i see photos of people with NF that have it very severe. I dont know much about it all i know is that i have it. and i never actually met anyone with it.

That was a beautiful montage. I have NF1. I would really like to help do something to get the word out there and help educate people. Thank You for creating this! :-)

This is wonderful. I love the video.

I have NF and i am doing a research paper on it. I would really LOVE it if anyone with NF1 would send me a message and tell me about how they deal with it and etc. Thank you

Two words: Thank You.

The reason no one understans it is cus they dont know how it is or what it is even like to have it. they are clueless, however - if they had it then theyd know exacly where we are cominh from, We are Strong people who can live to talk about it and realize that this is how god made us!