Neurofibromatosis 1

[forgotin811999]

I had you and your daughter on my myspace page, but I don't use that anymore. I have facebook now. I stopped using it around the time that her baby was born. Do you guys use facebook?

[TheMississippijim62]

i have nf 1

[tracey3475]

i have NF 1 and so does my daughter



[jessbritt121]

i have NF1. .

i have sevrel tumors

[piromaniac9999]

I myself am a victim of nf1 and doctors want to look at me because its not so common.

[RedUnicornLady]

I am with you my sister in NF, it can only make you stronger!!!!!!

[trozodepollo88]

i have nf1 in my rigth leg..

[Israelzecret]

I dont know much about this, but she looks fine. ^_^

[rustyboy12198]

NF can also cause limb loss. As it did me.

[Adzam24]

i have a mild form of nf-1 apart from a few of the spots on my hands no one would ever know. i was checked out as a young child and luckily got through puberty with nothing severe come up at all. my worry now is that my partner is unexpectantly pregnant, what is my child risk going to be of getting NF-1 i understand probably 50% but is it likely to far a far more severe case or will it be mild like me?

[McKennaWest1994]

i hve nf1

[laf0707]

I have NF1 as well

[squigglepiggles]

I have t-shirt which says

I have Neurofibromatosis

Neurofibromatosis does not have me

[dorismcmuffin]

Hiya, Both my daughters have NF1, they were diagnosed at age 4, I am very scared, because the doctors don't really tell you too much.

They are both healthy and well, one has all the marks (27) the other only has one at the moment. But very scared andupset about it. x

yr vid was nice though.

[vilainpetitcrapaud]

I have a neurofibromatosis. Happily I don't have great problem with it. Your video is very well! Maybe you know me: I wrote a NF poem "The Naughty Little Toad" You can find it in internet. Many apology for my spelling mistakes! I am French. Kind regards Francis

[jetsfan4life]

I am the only one in my family to have NF. When I was growing up some people including family members made it hard for me, but I thank God that I have my mom. She has been by my side through everything. Right now I have a tumor thats on my back not too far away from my spine and everyday it causes me pain. Everything is starting back up again. If any of you need someone to talk to feel free to send me a message.

[itoro22]

I kno excatly how u feel. i am goin through da very same thing ure goin through. Im da only one in my family who has NF and i have a tumor on my back dats on da nerves and close to my spine. It was hard growin up but my mom has been there for me through all a sugeries i have had.

[Selfharmer22]

im 11 i have nf 1 and 2 i have 5 tumors on the brain and im ok i can walk but in my mind im scared i might die i get bullied for it to if anyone would like to help me please do

[whoalillowe]

I'm 18 and I've also got NF1. You are so amazingly brave for dealing with your disorder. I was aslo made fun of when I was younger and it did hurt, I too am afraid of dying. When I was in 4th grade I had to have back surgery becasue the NF gave me Scoliosis. I think for me at least it got a lot easier in HS when kids learned that just beacsue you are different doens't mean you're weird. I hope those kids never have to go thorugh what you have, because they wouldn't be strong enough, stay tough.

[squigglepiggles]

you can't have both types of NF

[stownsendl]

I too have NF Neurofibromatosis. "Think it's hard to say? Try living with it." I was fairlly "normal" until the age of 30. I started having seizures. Now at the age of 54 I'm confined to a wheelchair & going blind. All my friends left. Peace. Wish I was. But I'm not dead............YET. :)

[shaun1912]

i glad 2 here ur still keeping up the fight for life, i have added a clip about me having nf as a kid and on it i say "it lives with me i dont live with it" and as long as i keep on saying that i will fight it to the end. p.s. you have friends here well family nf family.

[jbreckette]

my older brother, his daughter, myself and my son all have NF1. i have several tumors sitting on nerves that i plan on having removed. very painful.

[shaun1912]

hey gd video as ppl know no i have nf1 now as well and am leading a normal life, if any of you guys have nf and will like to talk i am happy 2 do it, i dont think the nf chat is working any more. shaun1912

[asuicidal1]

I sometimes wonder how bad my nf1 is going to get.

[shaun1912]

same i see ppl like reggie bibbs and get scard

[pearlmcd]

oh me too. leynzees a graet and brave girl i chat with her family on the ctf bb check it out its a good way of helping any one wit nf

[nymphette21]

hi im sarah im from the uk i have nf1 any one want to chat

[LifeOnMarsGal]

yeah I will..i am iluvantanddec on her new account..come and add me as a friend..i also have nf1 and live in the uk

[kirb784]

hi i am jeff i have nf

[tigsandbrit]

i have nf1 too

[beebee890]

i have neurofibromatosis too

[jahlovebk]

I have NF1

[Joesphfffffff]

i have NF1 too

[mh001e3010]

Hu just watched the video you put on here im Mark and NF Type 1 as well

[PinKWingSAngeL]

hiya again!! katie here!!

[Schehrazade]

I have NF1... :'(

[PinKWingSAngeL]

me too :'(

[babycham2006]

great vid, good luck

i have type nf1

[reggiebibbs]

Think the video is terrific! Never give up hope. What a Great mon and day to support there child. I pray for blessings on your family.