Neurofibromatosis - About The Children's Tumor Foundation

[BITTER0N]

We are very lucky & take it for granted.Praise God my children are healthy.

[MrGemma0]

What age do you first Start seeing symptoms

[silvweatest]

@MrGemma0 I have NF1 Iv known I had it for as long as I can remember, but they discovered it when I was around two. Others may not show symptopms. Each person is different. My bowed tiba bone is what alerted the doctors to me having it. I also had the fibromas and the cafe al ala (sp?) spots. It may be around 2, but it could be younger or older. It really does depend on the person.

[WTF123443]

i have Nf1. it isn't painful. i dont have learning disability. but i have accidents. a lot. everyday is a struggle knowing that im a high school student who still needs to be potty trained. ive had no surgery. there is no cure. i have to live like this forever. im the only one in my family who has shown sighns. and worst of all, i have to keep my nf a secret. i CANT spread the word. and it hurts me every day.

[PaganDANNYbee]

I would make me soo happy if thay found a coure. I hate NF the pain sucks. lol.

It would be neet to meet outher people that has NF. I dont that maney

[janejn7788]

i feel so sad.

[carlosperezvidal]

I have NF but i forgot which type i had ive gotten used to it but if i hit one of those bumps that NF gives you it hurts alot i got some in my heart and that is why i gotta go to miami childrens hospital every 6 moths to get checked

[browniethepirate]

I'm the only one in my family with NF(1) from what I know. My mom was adopted, so I could've gotten it from her family, and there's nobody from my dad's family who has/has had it.

[ThatKidKnows]

There is no cure for NF :( it's a genetic mutation. It can happen to anyone. I have NF. Learning difficulties too... :(

[Walmays]

I have NF1 so does my oldest son.

[tracey3475]

I have NF and so does my daughter

[icassie57]

I have it and I have learing disbilties and this 1 girl called me names like sped and stuff and it gets to u cuz it's sumtin u can't help

[brittanyrox122]

i have NF1 its not a easy thing to live with and not everything was talked about in this video

[CTForg]

@brittanyrox122 Hey Brittany, as you know NF has many different complications so it's hard to address everything in a short video. We have touched on the major aspects of the disorder in the hopes that it will compel interested individuals to learn more. Hope you are doing well and feeling great!

[carlosperezvidal]

@brittanyrox122 yes i have it its not that bad but it can cause learning dissabilities like me

[Sapphiregriffin]

i have it. maces me sad

[alex66moura]

olá eu tbm tenho NF do tipo 1,

ja tive dois ""piripaques"" no qual fui parar no hospital ambas as vezes... eu gostaria de saber como se chama essas crises que eu tive... grato!! ^^

[CrazyCowGurl1990]

My 3 year old nephew has N.F.1 and I pray to God everyday, that a cure will be found and I pray even harder that my nephew will live to see that day, The doctor says theres a 75% percent chance he wont make it to his 5th birthday.

The tumors are in his throat, slowly spreading through out his body and will eventually block his airway... I watch this video everyday and pray to God that my nephew will be alright.

[redsoxsuckhaha]

i have NF 1 SINCE BIRTH :}

[piromaniac9999]

this makes me sad.

i struggled with nf1 since i was young

I hope the best for this young man

[caracolina79]

Hello

I´d like to get information in spanish.

Carolina

[yomuso]

hola yo soy española y tambien tengo nf1. no tienen información para mandarmela en español. gracias

[alkathemy]

all people involved in this are angels may god bless all.

[gangster4life007]

I have NF1 to i went to the NF camp and it was a great experience to meet other people that can understand how it feels and meet new people with the same disorder i have i had a tumor on my ankle.

[WorldOfJane]

Hey have you gon information on the NFCamp? Im 16 n have NEVER heard if it. :)

[SAHM2004]

Excellent video! My 5 year old has NF1 and it was and has been difficult to explain it to people so they understand and this will be perfect! I will add this to our myspace and to our caringbridge site as well!

[redsoxsuckhaha]

i have NF as well a lot of people dont know about it i dont even know a hole lot about it and i had it for since birth 17 years

[bostonscholar]

Great video. How wonderful the internet and this site is. VCould have used this video 24 years ago when i was diagnosed

[peapod427]

Excellent video! My 3yr old friend, Rosie, & her family are dealing with NF1 and the sooner we find treatments and a cure the better!

[xchasingcarsx459]

i have NF1 and this is a really good video for those who dont know about it

[StJude482]

Kool video i am 22 and have N.F.1 ill put this as a fav and on my myspace

[sweetmalma]

Great informative video. I am glad to see CTF posting something like this. The more people that learn about NF the better!

[KNOTTYMAN]

Thanks for posting.

More people need to know about NF.