I'm 17 and would love to go to this but sadly i live in England and theres no way i could aford the ticket. there arnt any camps or anythig really for people with NF where i live. i never met anyone with NF and it would be nice one day, oh well guess ill just try and save the money
i whent to this camp for many years i love it there i did have my good and bad times but i loveed it but now i to old for it so now i got noing to do but go i wish thay got one for the aduts for any age to help all ages not just kids and teen we adut need help too
I WENT TO THIS CAMP!!!.. this was the most amazing experience I ever had, and because of this camp I went on to receive a bachelors degree and work full time to help others with disabilities
My cousin Jeane passed away the day after christmas in 2010 from nf and other complications. I miss her everyday. One of her good friends Christine is really into these camps. Jeane touched many hearts while she was on earth, and still in heaven. She was a first grade teacher. WE LOVE AND MISS YOU JEANE!!!!!!!!
@theshaanimawbeyshow@nikothecroat - the camp runs through age 21, this year's sessions almost full but if you're interested email Patrice at ppancza@ctf.org for more info.
@CTForg I am very happy to see that there is something out there like this. Hopefully, someday there won't be a need because everyone will understand one another. I am an RN in New Jersey; do you take volunteers or have openings for employment? I think it would be something I would like to be apart of.
I have NF1 but I have to say, I am very blessed by God. Even though I have NF1, I moved out of my parents house and moved to Los Angeles and went to school to become a chef. I have worked on a cruse ship in Hawaii for three years. Have faith in yourself and know no matter what you can do anything if you put your mind to it.
more about my NF1 it is located on the right side of my face,neck and back of my head. I had two sergerys in the past. I have found diet and working out help shrink it
I wish this place was around when I was a kid. I have been made fun my whole life because of my NF. I never felt normal even now that I'm 30 I still don't feel normal. I think a place like this would have helped me. I even live close to this camp. And I just now found out it exiats.
I wish this place was around when I was a kid. I have been made fun my whole life because of my NF. I never felt normal even now that I'm 30 I still don't feel normal. I think a place like this would have helped me.
i wish i had this camp to go to when i was a kid. i would have loved to go to a camp. but here is a camp just for kids with nf. have fun in camp nf brothers and sisters
i have NF and im lucky to not have any tumours yet, but my whole body is covered in the birthmarks, its so horrible i use to always get teased as a kid at school.
i have NF and im lucky to not have any tumours yet, but my whole body is covered in the birthmarks, its so horrible i use to always get teased as a kid at school.
I want to go soooo badly! Having grown up with NF, I've aked all about it to my parents and in the past year I've done so much research and learned so much,. I'm even writing a book about a girl my age who has it. I would absolutely LOVE to go! I just have to go convince my mom and dad to let me. I think it'd be an amazing experience. Out of curiousity, how much does it cost? Thanks so much for posting this video! It looks like a ton of fun!
Hi @babyblueeyes716, unfortunately 23 is too old for the counselor-in-training program but you can still come as a volunteer if you can get to Salt Lake City, then pay for room, board, and entrance to outside activities (roughly $300). Email Patrice Pancza at ppancza@ctf.org if you're interested in more info. Hope that helps!
Wish there was something like this in my area when I was younger. Having NF1 and not knowing anyone else with it was kindof lonely. It would of been nice to have someone else to talk to
Ils n'ont pas l'air d'être affectés fort fort à date. J'ai vu des cas où ils ont des déformités invraisemblables avec la moitié du visage fondu.. quand ce n'est pas tout le visage
it sad 4 ppl who have NF espically me caz i hav a nerve tumor on my whole leg.. i had 6 surgeries n i mite hav another 1..my leg is not like other kids legs.i go though horrible depression sumtimes n i can join any sports caz i cant run as other ppl can or walk for a long time .it sad caz i think i will be like this 4evar n i wont have someone to luv who will c me 4 me n not my leg, i had 2 guys that want to date me but im like no. i push them off caz if they ever find out thry wont like me 4 me
i live with nf1 since im 6, i m the only one in my town in my family, and in all my friends, i dont have tomor nor cancer, but i feel like im alone, i wish to meet ppl how have it in ottawa ontario,, but there no one that i know of , i been beat up cuz of it i have been push away i only started friends when i was 15 .
ifu have nf1 or nf2 add me ^_^ u dont have to be alone i m here and so are all the ppl with nf
i have it too, i didnt get diganosed until i was 19 when a cafe au lait spot appeared on my face, i got it removed, I live in Ireland so have never met anyone with NF1 either
I have nf-1, my dad has it my grandmother had it and I was told her mother had it.
my brother doesn't show that he has this disorder
I'm 41, I've known about this disorder for many years and had a few surgically removed from my arm, chest and a small one from my stomach. they progress as I get older. wish they're was some way to prevent them from sreading or passing it on.
As a child it was so hard for me - i use to be teased a lot at one point i was called raisin bran, spots. I really hated myself. Even now at 26 year old female i have self esteem issues, I wish i had this.
I am having an operation in under two weeks to remove a lump which they aren't sure if it is tumourus. But it will be gone. I see an NF specialist in London but they have nothing like this for kids with NF here.
No, no the one I am having operated on. It is growing inside my arm so it just looks like I have a fat arm but it is getting really big now that I even have to by clothes 2 sizes too big so my arm will fit, sometimes even bigger clothes. I do have one like that though, on my ankle.
i am close to be 19, i got NF1, thanks to the t "unlucky luck" I only got spots and a mild escolios, Most nf cases are like mine and like those kids. i
I have NF1. I have a lot of small tumor or neurofibromas on my chest and back. I would love to meet some people with NF. Do they have a get together like this for young adults?
my little sister has NF1 and she's gotten teased about her cafe au lait spots numerous times by little, ignorant kids yet she remains to be such an optomistic person even after 2 surgeries (3rd one coming up).
I also have this disorder. Lots of people don´t know it, en they can´t see it. Sometimes I hate that, because they laugh about my cafe/au/lait spots. They call me cow or whatever. That´s what i hate about it. but i´m also a lucky person!!
Yo también tengo esa maldita enfermedad, y me siento la más fea del mundo, a veces me da muho coraje verme al espejo y no poder lucir mi cuerpo, siempre lo tengo que estar escondiendo porque me da mucha pena que me vean los pequeños tumores que salen de mi cuerpo. Todavía si hubiera un tratamiento me haría sentir mejor, o conocer a alguien más que tenga esta enfermedad ya que me siento muy sola en esto, me siento como un monstruo.
Hola, disculpa que apenas te conteste. No recordaba el no. de mi cuenta. La verdad me encantaría ser tu amiga, y poder platicar de lo que sea. Cuenta conmigo.
Hi i am from germany and i have NF 1.I havent a problem with that ilness but i hate the Café au lait flecks all over my body!!In germany isnt a camp for people with NF.
Hello! I'm from the Philippines. I've got NF1 too, I had undergone many treatments including brain surgery. I'm hoping that I could meet you guys..GOD BLESS
Hello! I'm from the Philippines. I've got NF1 too, I had undergone many treatments including brain surgery. I'm hoping that I could meet you guys..GOD BLESS
@batterbee2000 I'm black and I have NF1. I was diagnosed when I was 3. I wish this camp existed when I was a kid, because there were things that I went through growing up that I could never talk to my family about. No one else has it but me and I always felt like they'd never understand what I go through every single day.
@jetsfan4life I'm glad that there are camps now. I hope i can go to one soon. I just had a surgery about a month ago to get a very large internal lump removed, I think i have NF2.
@batterbee2000 I hope you find out which type you have. I hope you get to go to camp too. It seems like it would be nice for young people to be surrounded by others that are just like them.
i neva say black ppl cnt get nf i say i neva heard of a black person with it n really were im from i neva heard of no 1 wit it in the bahamas other den my family
i kno black ppl can get nf i am black n i have nf1 n my whole family on my daddy side have nf.i say were i live in the bahamas i neva heard a case with nf even the docters is say they dnt see ppl with nf
i live in the bahamasa bahamian and i had nf1 since birth i have the spots and bumps iam black but i have never seen no one with nf like me espically a black person every one on my daddy have nf1.
i have schwannomatosis i was dicnos whnen i was brone it the raes type to have of nf and it is hard to geth thro life would be so much earser if didnt have this
Iv had it easy i guess get a MRI ever 5 years and see a nerologest one a year, but it been bout 3 years since iv seen him, i got a few bumps but I hopefully will get some of them removed this year
Im a 25 year old male & was diagnosed with NF Type 1 when I was about 13 (As if teen years arent akward enough try having a lump on your fvcking eyelid!), When I explain to people that I have NF they normally respond "What? The National Front?!" lololol....damn, Now I've gone & depressed myself, I wish they'd have this sort of get together in the UK for ADULTS-Anyone know any community forums for sufferers of NF?
i just found out i have NF and am 24 years old i had a lot of spots and i thought it was just freckles and only one bump on my chest i was told it was breast tissues lol but so far this year of 08 in january i was getting really sick with head aches, vision and hearing problem i was so depressed i did know what was wrong with me until later on in march april of 2008 but i am trying my best to be strong but its hard sometimes i have goals and dreams that i might not be able to fulfill.
These camps take a lot of organizing... like you wouldn't believe! A friend and I tried to help start one in Canada a few years back, but we couldn't find an adult at NF Canada that had the time to help us and do a lot of the grunt work. It isn't just about finding a camp ground. Take into account that there are many people with NF that have severe physical disabilities - the camp ground has to specialize in that. The camp in the states goes to Camp K (where all the camp leaders know how to)
oh i mean like do they have camps and such. i have nf 1 too. had a major op last year that saved my life because of it. Really gave me a greater appreciation for life!
I wish I found something like this when i was younger.. I have NF1, all my life. my dad has it. and my sister has it. but Ive never met anyone else with it. I didnt know so many people had it.
It is quite something to realize that you have one of the most common genetic disorders out there, but we get very little attention in the media. It actually surprises me that there aren't can celebrities living with NF or advocating for their child who has NF (maybe they are but are doing it in secret). I do know that Gillian Anderson's brother has it and she has donated lots to NF in the past.
I am from the uk.. and would have loved to go on a camp like that as a kid... can any1 please tell me if there is a simular thing in the uk... not for kids.. but older people?
I know that a lot of NF chapters in the States offer family camp, which families and adults living with NF are welcome to attended. I've never been to one of those ones, but I've heard great things about it. I would suggest searching out the NF chapter closest to you and asking them for info.
i have nf but everyone is gonna die one day, that is the one certanty in life oh an taxes lol, wish we had stuff like that in th uk i only know my dad an sis wid nf an it is so limited, it is hard to think i will ever find love cos i couldnt look at someone twice who had a body like me, an i know that is major shallow but so is the rest of the world
i totally understand what you mean i never think ill ever find love either i have had people leave my life because of it or i think so now i tell them before hand and not to fall in love with me lol because if they cant see pass it they dont love you
no your not....there are a lot of NF chapters in Canada that support Canadians with NF...plus there is NF Canada as well. I know quite a few people with NF and they are Canadian too
Congratulation your clip is very well. In France unhappily we do not have NF camp! I hope sooner or later children with NF will spend marvellous holidays in such camp. Maybe you know me I'm written a poem "The Naughty Little Toad" You can read it on internet. Kind regards Francis
I want to say 2005 or so because I went that year and I think that was the year before my freshman year of high school. I got a copy of it, don't know where it went though. It is so much fun, I miss my friends.
I'm 17 and would love to go to this but sadly i live in England and theres no way i could aford the ticket. there arnt any camps or anythig really for people with NF where i live. i never met anyone with NF and it would be nice one day, oh well guess ill just try and save the money
runescapeftl100 1 month ago
@Sarsaparillamann Nothing is wrong with me.
ChokedByRainbows 2 months ago
SHave those pimples off you fucking losers.
ChokedByRainbows 3 months ago
@ChokedByRainbows wth is wrong with you
Sarsaparillamann 2 months ago
@ChokedByRainbows lol fucking pussy , talking shit and hiding your account. brave move brah
Sheenious 1 month ago
I have NF also but i enjoy life to the fullest
peugeotrider2016 3 months ago
nice people and videos,the boy talk here is sooooo beatiful! hugs
ARTFLOP 3 months ago
i whent to this camp for many years i love it there i did have my good and bad times but i loveed it but now i to old for it so now i got noing to do but go i wish thay got one for the aduts for any age to help all ages not just kids and teen we adut need help too
YugiDragonStar 5 months ago
i have NF.1 im 14 D:
1DanniiBoii6 6 months ago
I WENT TO THIS CAMP!!!.. this was the most amazing experience I ever had, and because of this camp I went on to receive a bachelors degree and work full time to help others with disabilities
jstevensradio 7 months ago
My cousin Jeane passed away the day after christmas in 2010 from nf and other complications. I miss her everyday. One of her good friends Christine is really into these camps. Jeane touched many hearts while she was on earth, and still in heaven. She was a first grade teacher. WE LOVE AND MISS YOU JEANE!!!!!!!!
Sciss55 7 months ago
can 19 years olds come? im from Australia and want to meet people with my condition.
theshaanimawbeyshow 7 months ago
@theshaanimawbeyshow @nikothecroat - the camp runs through age 21, this year's sessions almost full but if you're interested email Patrice at ppancza@ctf.org for more info.
CTForg 7 months ago
@CTForg thank you, i think ill go next year
theshaanimawbeyshow 7 months ago
@CTForg I am very happy to see that there is something out there like this. Hopefully, someday there won't be a need because everyone will understand one another. I am an RN in New Jersey; do you take volunteers or have openings for employment? I think it would be something I would like to be apart of.
jeste4187 3 months ago in playlist Neurofibromatosis
Hey I'm 19 i have nf1 i live in new zealand could i come to your camp????
nikothecroat 7 months ago
going dis july cant wait
leahcard1 8 months ago
going dis july cant wait
leahcard1 8 months ago
I have NF1 but I have to say, I am very blessed by God. Even though I have NF1, I moved out of my parents house and moved to Los Angeles and went to school to become a chef. I have worked on a cruse ship in Hawaii for three years. Have faith in yourself and know no matter what you can do anything if you put your mind to it.
more about my NF1 it is located on the right side of my face,neck and back of my head. I had two sergerys in the past. I have found diet and working out help shrink it
Mr80Classic 9 months ago
I wish this place was around when I was a kid. I have been made fun my whole life because of my NF. I never felt normal even now that I'm 30 I still don't feel normal. I think a place like this would have helped me. I even live close to this camp. And I just now found out it exiats.
101snaps 10 months ago
@101snaps i have it too and im 21... i was made fun of but i have one best friend that stayed with me threw it all
loves2Bcrazy 9 months ago
I wish this place was around when I was a kid. I have been made fun my whole life because of my NF. I never felt normal even now that I'm 30 I still don't feel normal. I think a place like this would have helped me.
101snaps 10 months ago
i want to go to this camp this year
vanessalizette 10 months ago
i wish i had this camp to go to when i was a kid. i would have loved to go to a camp. but here is a camp just for kids with nf. have fun in camp nf brothers and sisters
Awtted 10 months ago
I'm going to NF camp this year!
TheKyleConrad 11 months ago
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vanessalizette 10 months ago
@TheKyleConrad you are going to love it. I have been 3 times. I am actually in this video! Time of my life!
Joesphfffffff 9 months ago
i have NF and im lucky to not have any tumours yet, but my whole body is covered in the birthmarks, its so horrible i use to always get teased as a kid at school.
bullbrooke 11 months ago
i have NF and im lucky to not have any tumours yet, but my whole body is covered in the birthmarks, its so horrible i use to always get teased as a kid at school.
bullbrooke 11 months ago
I want to go soooo badly! Having grown up with NF, I've aked all about it to my parents and in the past year I've done so much research and learned so much,. I'm even writing a book about a girl my age who has it. I would absolutely LOVE to go! I just have to go convince my mom and dad to let me. I think it'd be an amazing experience. Out of curiousity, how much does it cost? Thanks so much for posting this video! It looks like a ton of fun!
Liontail100 11 months ago
@Liontail100 I went and I would be happy to help persuade them to let you go. They can email me or whatever it was a life changing opportunity.
Joesphfffffff 9 months ago
anything for 3 year olds?
myalaynaangel 11 months ago
This has been flagged as spam show
wish i could have gone to something like this when I was younger. It loks like a lot fun.
mamasuzie 1 year ago
wish i could have gone to something like this when I was younger. It loks like a lot fun.
mamasuzie 1 year ago
This has been flagged as spam show
do they have slots open for camp counselors? im 23, so im allittle old to attend camp, but i have NF1, please let me know
babyblueeyes716 1 year ago
This has been flagged as spam show
do they have slots open for camp counselors? im 23, so im allittle old to attend camp, but i have NF1, please let me know
babyblueeyes716 1 year ago
do they have slots open for camp counselors? im 23, so im allittle old to attend camp, but i have NF1, please let me know
babyblueeyes716 1 year ago
Hi @babyblueeyes716, unfortunately 23 is too old for the counselor-in-training program but you can still come as a volunteer if you can get to Salt Lake City, then pay for room, board, and entrance to outside activities (roughly $300). Email Patrice Pancza at ppancza@ctf.org if you're interested in more info. Hope that helps!
CTForg 1 year ago
im raising money for neurofibromatosis.. if you use ebay every time you goto the ebay site goto the site below and it raises money.
nfonline.co.uk then goto the ebay items tab
if your buying or selling click through that link to raise money for neurofibromatosis. it doesnt cost you anything! support nf now.
whooseyerdaddy 1 year ago
It's in Utah Aly, but has kids from all over the U.S. and Canada, visit ctf.org for more info.
CTForg 1 year ago
were is the camp located????
alybaby55 1 year ago
Wish there was something like this in my area when I was younger. Having NF1 and not knowing anyone else with it was kindof lonely. It would of been nice to have someone else to talk to
Briandaman24 1 year ago
Ils n'ont pas l'air d'être affectés fort fort à date. J'ai vu des cas où ils ont des déformités invraisemblables avec la moitié du visage fondu.. quand ce n'est pas tout le visage
xMazingerZ 1 year ago
wow i don't know there was a camp for other people with NF. wish i could go but i don't live in Utah.
TheAppleMan100 1 year ago
i have NF1
WOLFNBEAST 1 year ago
I was gonna go to this camp but its in Utah .-.
chyeahhitsmee 1 year ago
it sad 4 ppl who have NF espically me caz i hav a nerve tumor on my whole leg.. i had 6 surgeries n i mite hav another 1..my leg is not like other kids legs.i go though horrible depression sumtimes n i can join any sports caz i cant run as other ppl can or walk for a long time .it sad caz i think i will be like this 4evar n i wont have someone to luv who will c me 4 me n not my leg, i had 2 guys that want to date me but im like no. i push them off caz if they ever find out thry wont like me 4 me
lililuvsyuni16 1 year ago
Bowling? In a three years, soon to be four, i've gone, i have never gone bowling while i was there.
SandDeath24 1 year ago
can you get cafe au lait spots removed?? I have a bunch on my stomach and one on my arm and i hate it:(
AllieandFriendz 1 year ago
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txtingirl1 1 year ago
i live with nf1 since im 6, i m the only one in my town in my family, and in all my friends, i dont have tomor nor cancer, but i feel like im alone, i wish to meet ppl how have it in ottawa ontario,, but there no one that i know of , i been beat up cuz of it i have been push away i only started friends when i was 15 .
ifu have nf1 or nf2 add me ^_^ u dont have to be alone i m here and so are all the ppl with nf
ammkuamaya 1 year ago
i have it too, i didnt get diganosed until i was 19 when a cafe au lait spot appeared on my face, i got it removed, I live in Ireland so have never met anyone with NF1 either
becsmcco 1 year ago
i wish i could go to this but i live in london, i havnt ever met anyone in london with nf dont think i ever will
themaccyguy 1 year ago
I have nf-1, my dad has it my grandmother had it and I was told her mother had it.
my brother doesn't show that he has this disorder
I'm 41, I've known about this disorder for many years and had a few surgically removed from my arm, chest and a small one from my stomach. they progress as I get older. wish they're was some way to prevent them from sreading or passing it on.
my heart goes out to all of you-
5intheam 1 year ago
As a child it was so hard for me - i use to be teased a lot at one point i was called raisin bran, spots. I really hated myself. Even now at 26 year old female i have self esteem issues, I wish i had this.
SuperSkyQueen 1 year ago
i have two tumors in my neck also. .
i had it since i was 18 months.
NF sucks
jessbritt121 1 year ago
me too
alexander1980ish 1 year ago
people with neurofibromatosis add me as a friend
plz cuz I have it (NF1)
Monkeygal1000 1 year ago
I to have nf1 I have bumps all over my body. still people don't under stand. They still look at me as a freak .
sspotti 1 year ago
wish i knew about this awhile back...good to kno tho... ^_^
KellykaLynn 2 years ago
i have NF type 1 got a tumor removed from my thigh last year
jedouril 2 years ago
i wish i had known about this whne i was younger... 8* /
SweetBrwnSuga 2 years ago
im have it....ima long distance swimmer tomarow i am going to tell everyone.
Sapphiregriffin 2 years ago
ey im A Aussie bloke who also has nf1 and im more then happy 2 chat to any one who wants to chat
shaun1912 2 years ago
i was also on teh news.. because of my NF1 and my learning disability
hawker445 2 years ago
One tip is to STAY OUT OF THE SUN. WEAR SUN SCREEN
hawker445 2 years ago
I am having an operation in under two weeks to remove a lump which they aren't sure if it is tumourus. But it will be gone. I see an NF specialist in London but they have nothing like this for kids with NF here.
FrazzleYeah 2 years ago
ive got one on my left thigh... they say if i get it removed it would activate more
hawker445 2 years ago
Oh, not good. Sorry to hear that but I guess it is best to keep it then.
FrazzleYeah 2 years ago
is your like pink and mushy?
hawker445 2 years ago
No, no the one I am having operated on. It is growing inside my arm so it just looks like I have a fat arm but it is getting really big now that I even have to by clothes 2 sizes too big so my arm will fit, sometimes even bigger clothes. I do have one like that though, on my ankle.
FrazzleYeah 2 years ago
@hawker445 they told me the same thing except mine is one my right leg
welive4laughs 2 years ago
lol interesting =D
The neurofribroma? how big is it? mine is 1.5 inches long and 1.75 inchens wide. and .45 inches high
hawker445 2 years ago
yeah...a little bigger than that but i have to buy my pants a little bigger too like the person up a couple comments :)
welive4laughs 2 years ago
i have nf type 1 and im glad they have that camp for kids with nf kids and people who has nf ur not alone sub to me cause people with nf are smart
redsoxsuckhaha 2 years ago
my docs say i have a variation of NF1 and NF2... id love to actually meet someone else who has NF... these kids are lucky they get to go to camp.
Lezlierules 2 years ago
i am close to be 19, i got NF1, thanks to the t "unlucky luck" I only got spots and a mild escolios, Most nf cases are like mine and like those kids. i
ikerbeast666 2 years ago
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ikerbeast666 2 years ago
i live in london and i have nf1 sadlt most doctors dont even no what it is
themcbirnie 2 years ago
I would like to go to this camp, i woud defnitly like to mean other kids with NF i do feel alone in the world... i am the only kid i know with NF
piewillkillbob 2 years ago
I have NF1. I have a lot of small tumor or neurofibromas on my chest and back. I would love to meet some people with NF. Do they have a get together like this for young adults?
Nevergoingtohappen 2 years ago
my little sister has NF1 and she's gotten teased about her cafe au lait spots numerous times by little, ignorant kids yet she remains to be such an optomistic person even after 2 surgeries (3rd one coming up).
roogie23 2 years ago
I also have this disorder. Lots of people don´t know it, en they can´t see it. Sometimes I hate that, because they laugh about my cafe/au/lait spots. They call me cow or whatever. That´s what i hate about it. but i´m also a lucky person!!
XoXO
ilovemusiic93 2 years ago
i have this disorder im lucky enough not to have it bad just cant move by left part of my body as well has my right
miked1136 2 years ago
WOW looking at some of these kids you would,nt even know they have this disorder.
johnny10301968 2 years ago
Yo también tengo esa maldita enfermedad, y me siento la más fea del mundo, a veces me da muho coraje verme al espejo y no poder lucir mi cuerpo, siempre lo tengo que estar escondiendo porque me da mucha pena que me vean los pequeños tumores que salen de mi cuerpo. Todavía si hubiera un tratamiento me haría sentir mejor, o conocer a alguien más que tenga esta enfermedad ya que me siento muy sola en esto, me siento como un monstruo.
yanosabeapecado 2 years ago
Podemos ser amigos??? yo también tengo ésta enfermedad y me siento mal, pero sé que tú debes de valer mucho, sería bueno tener amigas como tú
andresfpatino 2 years ago
Hola, disculpa que apenas te conteste. No recordaba el no. de mi cuenta. La verdad me encantaría ser tu amiga, y poder platicar de lo que sea. Cuenta conmigo.
yanosabeapecado 2 years ago
אני גם עם N.F
.זה מאוד חשוב שעושים את המחנה הזה
ויכול לתרום הרבה
תמשיכו תמיד עם זה
I am also with N.F
. This is very important to do the camp this
And can contribute much
Keep it always with
engel8831 2 years ago
Hi i am from germany and i have NF 1.I havent a problem with that ilness but i hate the Café au lait flecks all over my body!!In germany isnt a camp for people with NF.
xXBigSistaXx 2 years ago
i have NF and have cafu spots on my body dunno if i got less ive only got 3 big one the rest r nearly not seeable
ls4ever999 2 years ago
why isnt there anything like this in the uk?
whooseyerdaddy 2 years ago
I dunno, But its annoying :/
WorldOfJane 2 years ago
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ikerbeast666 2 years ago
I have NF too.I miss camp K. Hope to go soon.If anyone wants to talk..Message me would love to chat.
jfiege 2 years ago
hey is anyone from the uk with nf please contact me im 33 and have nf1 and im looking for places in the uk where i can meet other people with nf
whooseyerdaddy 2 years ago
Hello! I'm from the Philippines. I've got NF1 too, I had undergone many treatments including brain surgery. I'm hoping that I could meet you guys..GOD BLESS
jeanricbonz 2 years ago
Hello! I'm from the Philippines. I've got NF1 too, I had undergone many treatments including brain surgery. I'm hoping that I could meet you guys..GOD BLESS
jeanricbonz 2 years ago
I have NF, right now its not that bad, but i know it is only going to get worse. I cant even look at my self with out thinking about it.
batterbee2000 2 years ago
@batterbee2000 I'm black and I have NF1. I was diagnosed when I was 3. I wish this camp existed when I was a kid, because there were things that I went through growing up that I could never talk to my family about. No one else has it but me and I always felt like they'd never understand what I go through every single day.
jetsfan4life 1 year ago
@jetsfan4life I'm glad that there are camps now. I hope i can go to one soon. I just had a surgery about a month ago to get a very large internal lump removed, I think i have NF2.
batterbee2000 1 year ago
@batterbee2000 I hope you find out which type you have. I hope you get to go to camp too. It seems like it would be nice for young people to be surrounded by others that are just like them.
jetsfan4life 1 year ago
@jetsfan4life That would be great. I hope i can go to one sometime.
batterbee2000 1 year ago
there are no case of nf were i live to and i never heard of a black person with nf
shortgurl2 2 years ago
black people can get NF too, i have met quite a few black people with it
OldSchoolRocker456 2 years ago
i neva say black ppl cnt get nf i say i neva heard of a black person with it n really were im from i neva heard of no 1 wit it in the bahamas other den my family
shortgurl2 2 years ago
1 in 4000 people hav neurofibromatosis, thats actually alot of people~ i've seen many black people with nf...
Rastaguy2 2 years ago
i kno black ppl can get nf i am black n i have nf1 n my whole family on my daddy side have nf.i say were i live in the bahamas i neva heard a case with nf even the docters is say they dnt see ppl with nf
shortgurl2 2 years ago
i live in the bahamasa bahamian and i had nf1 since birth i have the spots and bumps iam black but i have never seen no one with nf like me espically a black person every one on my daddy have nf1.
shortgurl2 2 years ago
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shortgurl2 2 years ago
i was diagnoise when i was a year old i believe
mypianoheadcase 2 years ago
aww im member going to camp kostopolus like 9 years ago this bring back memories
mypianoheadcase 2 years ago
im 13 and i was diagnosed with NF when i was 8 i had 3 surgerys my whole life cause of it...
LaughLiveLovex3 2 years ago
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MONIQUEIJ 2 years ago
I HAVE NF
redsoxsuckhaha 3 years ago
i have schwannomatosis i was dicnos whnen i was brone it the raes type to have of nf and it is hard to geth thro life would be so much earser if didnt have this
angelbutterflukisses 3 years ago
Iv had it easy i guess get a MRI ever 5 years and see a nerologest one a year, but it been bout 3 years since iv seen him, i got a few bumps but I hopefully will get some of them removed this year
joemovieseed 3 years ago
i have nf since my birth an had a brain tumor last year its a very hard thing to go through
kaibaslave91 3 years ago
i have nf1 i am 15 and i can barley walk
ilikefriedfood 3 years ago
Im a 25 year old male & was diagnosed with NF Type 1 when I was about 13 (As if teen years arent akward enough try having a lump on your fvcking eyelid!), When I explain to people that I have NF they normally respond "What? The National Front?!" lololol....damn, Now I've gone & depressed myself, I wish they'd have this sort of get together in the UK for ADULTS-Anyone know any community forums for sufferers of NF?
RtardD2 3 years ago
i just found out i have NF and am 24 years old i had a lot of spots and i thought it was just freckles and only one bump on my chest i was told it was breast tissues lol but so far this year of 08 in january i was getting really sick with head aches, vision and hearing problem i was so depressed i did know what was wrong with me until later on in march april of 2008 but i am trying my best to be strong but its hard sometimes i have goals and dreams that i might not be able to fulfill.
browneyeguy 3 years ago
I am mad, this camp isn;t in canida
piewillkillbob 3 years ago
I am mad to this camp isn't in New zealand.
alish234 3 years ago
These camps take a lot of organizing... like you wouldn't believe! A friend and I tried to help start one in Canada a few years back, but we couldn't find an adult at NF Canada that had the time to help us and do a lot of the grunt work. It isn't just about finding a camp ground. Take into account that there are many people with NF that have severe physical disabilities - the camp ground has to specialize in that. The camp in the states goes to Camp K (where all the camp leaders know how to)
kalicat20 2 years ago
any one know if Australia has any thing for nf?
sweetjess85 3 years ago
Yeah im from Australia and have NF type 1
pegz696 3 years ago
oh i mean like do they have camps and such. i have nf 1 too. had a major op last year that saved my life because of it. Really gave me a greater appreciation for life!
sweetjess85 3 years ago
I wish I found something like this when i was younger.. I have NF1, all my life. my dad has it. and my sister has it. but Ive never met anyone else with it. I didnt know so many people had it.
MissJessyDawn 3 years ago
It is quite something to realize that you have one of the most common genetic disorders out there, but we get very little attention in the media. It actually surprises me that there aren't can celebrities living with NF or advocating for their child who has NF (maybe they are but are doing it in secret). I do know that Gillian Anderson's brother has it and she has donated lots to NF in the past.
kalicat20 2 years ago
I am from the uk.. and would have loved to go on a camp like that as a kid... can any1 please tell me if there is a simular thing in the uk... not for kids.. but older people?
Rcokyjay 3 years ago
I know that a lot of NF chapters in the States offer family camp, which families and adults living with NF are welcome to attended. I've never been to one of those ones, but I've heard great things about it. I would suggest searching out the NF chapter closest to you and asking them for info.
kalicat20 2 years ago
i have nf but everyone is gonna die one day, that is the one certanty in life oh an taxes lol, wish we had stuff like that in th uk i only know my dad an sis wid nf an it is so limited, it is hard to think i will ever find love cos i couldnt look at someone twice who had a body like me, an i know that is major shallow but so is the rest of the world
deajas 3 years ago
i totally understand what you mean i never think ill ever find love either i have had people leave my life because of it or i think so now i tell them before hand and not to fall in love with me lol because if they cant see pass it they dont love you
but lets keep our faith strong
browneyeguy 3 years ago
I miss that camp to that camp was the shit I miss all my friends that i made there....
gangster4life007 3 years ago
Frick...you guys make me miss camp :(
kalicat20 3 years ago
i have nf too, i wish i could meet up r talk wth some else with the condition
Hazekinse88 3 years ago
i have nf
monkeysgirl8 3 years ago
I think I am the only kid in Kansas with NF.
shittyshoet 3 years ago
Im probly the only kid in canada with NF
piewillkillbob 3 years ago
did u know that there are more nf cases that ... i cant remember correctly but i am pretty sure its cystic fibrosis
sweetjess85 3 years ago
canada has ca. 33 mio habitants --> ca 9 000 people who have NF
Do something! Whats the internet there for??
use it to give a message to other people in your country with NF! Man! never give up!
impossible is nothing
tohomas10 3 years ago
no your not....there are a lot of NF chapters in Canada that support Canadians with NF...plus there is NF Canada as well. I know quite a few people with NF and they are Canadian too
kalicat20 2 years ago
Ditto
piewillkillbob 3 years ago
Congratulation your clip is very well. In France unhappily we do not have NF camp! I hope sooner or later children with NF will spend marvellous holidays in such camp. Maybe you know me I'm written a poem "The Naughty Little Toad" You can read it on internet. Kind regards Francis
vilainpetitcrapaud 4 years ago
When I was at camp there was a boy from I for get where but not the US or Canada so maybe you could come
cls2b 3 years ago
When was this on? Brings back so many memories- what a great summer!
bostonscholar 4 years ago
When was this video done? Its great- brings back memories. The year I went was a great year
bostonscholar 4 years ago
I want to say 2005 or so because I went that year and I think that was the year before my freshman year of high school. I got a copy of it, don't know where it went though. It is so much fun, I miss my friends.
Freedomwriter24 2 years ago
I love that. Really GREAT GREAT GREAT!
adgiant 4 years ago