As one who myself has a very mild form of NF, it is challenging to explain to others. Others often seem scared, confused, etc. We are just people like them! We may have some different challenges, but we laugh, live, love, etc. Don't worry about people's often hurtful comments/actions. You are perfect just the way you are!
hello! thanks for posting this. I have N.F. 1 Doctor told us when I was 10 yrs old. now I am 45. It has made my life very difficult! cancer, & interstitial -unknown seizure disorder are just the high lights! But I'm still here. to the surprise to a few doctors! Hang in there guys, if I can, ANYONE can. If you're ever feeling sorry for your self, go to discovery heath, there is always someone who has it much worse then you or I. Good luck to you all & remember we are NOT alone. we got the web!
Thank you for making this I have NF and i did let it get to me when i was growing up all in school i missed on alot of this just bc of nf... alot of people dont know about NF and make of you people that have it i wish they knew what we had and have to go thought. its not easy all the time..
iam 26 and iam suffering from NF-1 too.But only in my whole family who is suffering from dis.......but i dont care ane more, I go to gym,swiming and dont care about other people even if they stare at me......what else can i do.........?
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
I Have NF-1 too, but no one in family have this genetic disorder its only me who is suffering and more worried when I heard that there is no treatment for them.....As iam going to marry, just wondering what is the probabilty that dis genetic order will transfer to my children.......
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.
I was told i had NF1 from birth, The NF cause a bone deformity in my right leg, The leg broke and has a growth deformity aswell so its extremly skinny. When summer comes around i am very self concious and where jeans when at the shops or walking around but at the beach i just try and think im like every body else.
My dad also NF1 and the fibromas u talk of vary from person to person. U may get alot or few, they may be big or small. But they say as u get older u may get alot more fibromas.
My right leg is also smaller, and deformed, When I was a kid I broked it many times. But now its 14 years ago. So I have a bandage around my leg. Skena its called in my country.. I have fibroms on my body too. But I hope it will be not so many-
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.
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! :-)
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
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!
Wow, this was amazing! So beautiful and it puts real people's faces in the minds of the people who watch which makes this issue more real to them. What song is that you used? It is beautiful!
As one who myself has a very mild form of NF, it is challenging to explain to others. Others often seem scared, confused, etc. We are just people like them! We may have some different challenges, but we laugh, live, love, etc. Don't worry about people's often hurtful comments/actions. You are perfect just the way you are!
VideoGuyNC 1 month ago
me and two of my kids have nf1
9joda 5 months ago
hello! thanks for posting this. I have N.F. 1 Doctor told us when I was 10 yrs old. now I am 45. It has made my life very difficult! cancer, & interstitial -unknown seizure disorder are just the high lights! But I'm still here. to the surprise to a few doctors! Hang in there guys, if I can, ANYONE can. If you're ever feeling sorry for your self, go to discovery heath, there is always someone who has it much worse then you or I. Good luck to you all & remember we are NOT alone. we got the web!
LisaB91165 1 year ago
Very nice. I made a video about NF too.
morguebabe 1 year ago
Thank you for making this I have NF and i did let it get to me when i was growing up all in school i missed on alot of this just bc of nf... alot of people dont know about NF and make of you people that have it i wish they knew what we had and have to go thought. its not easy all the time..
SweeetKyChick 2 years ago
I also have NF 1. It sucks big time.
LOVETROLL69ME 2 years ago
Very Nice video. Thank you for taking the time making this video. I also have NF.
Live in Chattanooga, TN
paul37421 3 years ago
I have nf1. Someone wrote they don't like going out in public. Don't ever be afraid. You are all beatiful and are God Children.
It took me years to take my shirt off in public. Now I can care less. So for you young kids, don't let it defeat you!
rushdude67 3 years ago
iam 26 and iam suffering from NF-1 too.But only in my whole family who is suffering from dis.......but i dont care ane more, I go to gym,swiming and dont care about other people even if they stare at me......what else can i do.........?
Shahzada1prince 3 years ago
dit heeft gansje ook
loetklap 3 years ago
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
emmancharl 3 years ago
I Have NF-1 too, but no one in family have this genetic disorder its only me who is suffering and more worried when I heard that there is no treatment for them.....As iam going to marry, just wondering what is the probabilty that dis genetic order will transfer to my children.......
Shahzada1prince 3 years ago
50% im pretty sure
fingerboardpro123 3 years ago
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.
Curlyreetz 3 years ago
I have it too youll be alright I passed on to my daughter and she has trunking on her leg
missbabyjoy 3 years ago
I was told i had NF1 from birth, The NF cause a bone deformity in my right leg, The leg broke and has a growth deformity aswell so its extremly skinny. When summer comes around i am very self concious and where jeans when at the shops or walking around but at the beach i just try and think im like every body else.
My dad also NF1 and the fibromas u talk of vary from person to person. U may get alot or few, they may be big or small. But they say as u get older u may get alot more fibromas.
pegz696 3 years ago
My right leg is also smaller, and deformed, When I was a kid I broked it many times. But now its 14 years ago. So I have a bandage around my leg. Skena its called in my country.. I have fibroms on my body too. But I hope it will be not so many-
Zerlina12 3 years ago
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.
ndainio 3 years ago
god bless ..may god help u always
thechina 3 years ago
yo tambien tengo esta enfermedad.
¿Que habremos hecho para merecernos esto.
Dios no existe.
transgenico99 3 years ago 2
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
vilainpetitcrapaud 4 years ago
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.
katielyn19990 4 years ago
thanks NF Thailand
nopnitaya 4 years ago
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.
ratiqus 4 years ago
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! :-)
MNClayFan78 4 years ago
This is wonderful. I love the video.
reggiebibbs 4 years ago
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
SweetBrwnSuga 4 years ago
I try not to think about it.
asuicidal1 4 years ago
Two words: Thank You.
sakar181 4 years ago
Awesome job Beth. Thanks for making the vid.
KNOTTYMAN 4 years ago
I have NF and no one seems to really understand it
squigglepiggles 4 years ago 4
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!
lilbethy84 4 years ago
Wow, this was amazing! So beautiful and it puts real people's faces in the minds of the people who watch which makes this issue more real to them. What song is that you used? It is beautiful!
Love,
Meg
NicaGirl 4 years ago 2