I don't have learning disabilities...I have no problem with that. I have those cafe-au-lait spots, neurofibromas..cystic lesions in my brain, scoliosis, had early puberty and now I'm not growing anymore. I'm afraid of my children catch it from it. I don't want them to endure (there is worse, but yet) what I'm enduring. I don't want them to see in hospital, staying there for days, or seeing doctors every month, or complaining or even hurting. For a parent it's not easy to see that.
i live with NF had one remoived from sipnalcord T1-T3 doc said be for surgary i would never walk agin but with gods will iam still walking and holding down a full time job (that was back in 01) and 2 surgery same spot in 07 and still moiving my youngest has 10 of the cafe-au-lait spots but said thing is i never knew what i had intell i was 30 hadthe tumers since i as 12 finaly found a doc who knew wat she was doing
lynzee i was also born with nf1 i have the spots and some nerofibromas but nothing serious. i was the first in my fam to have it im 23 and i have two baby girls im nots ure if they have it yet i hope they dont.
o God heal us,its so difficult to accept this condition especially when you see people around with good health,its only you who have the ans to this cure.please tommorow will too late heal us now pls GOD
i have nf1 i used to get mri's once every year to check for tumors in my brain but now its evry two years and this year i have to get one. i just hope they can find a cure soon because u can get cancer from it, theres a 50% chance of a child to have learning disabilities when born and more. all we can do is pray
hi i suffer from nf1 and find it hard to fit in, i have always been bullied and ridiculed on the streets, now i always wear a hoody to cover the ones on my head, its hard to find a hat that will fit. its not us that have the problem it all of you that make fun of those who are slightly different. if a child can come an ask whats wrong an then understand thats how you were born then so an adult sould understand more.
minha irma e portadora da deficiencia mas nada disso fez com ela se deixasse levar pelas aparencia!!! eu aconcelho pra que tem a doença peÇa pra DEUS lher dar foças POR QUE TUDO EU POSSO NAQUELE QUE ME FORTALECE!!!!!
I dont know if I have NF1, I have recently been diagnosed with scoliosis and my doctor saw obvious cafe au lait patches should I worry about this anyhelp such appreciated :)
i have NF1 and i would like to help people who would like more info on this as i know most things about NF1 and only NF1 as this is what i have done research on
dont feel sorry for us we will make it through and the love of friends and family and our faith but insteed support our causes and help us find a cure
im 16 and have mild nf ... mostly just cafe-laut spots ... didnt have any problems so far thank god ! always feel sorry for those who do .... hopefully there'l be a cure soon
my Bf has it... =( but despite the fact that he does have it he is honestly an amazing person and i think he is really mature with how he's dealt with it... he goes for surgery on his ear July 2 for something that has to do with it and he has a cyst on the side of his like cheek and they are gonna put him through a scientific thing.. please pray for him.. His name is Kevin Bickerdike and he is an amazing person... thanks <3
I have nf 1. as do many who watch this video, i have been afraid incase in the future i would pass it on to my children when i have the, but now the gene can be removed from female eggs so it can be stopped from being passed on :)
i am stronger than my desase , i got an ilness but i am not ill!here there is a lot of pepole crying becouse they got an ilness, as i used to do. i was benn thinking a lot of time abaout it. is not the pepole who was been agaist me, it was been me who was against i My wish, dont have compassion about me.
i have this i am 14 and mi mum died of it when i was 4 but 2 everyone who has dis there are always some good days that follow the bad so keep smiling everythink will e allrite
i have nf it is in the back of my eyes and in my ear. i do not know what is going to happen to me so i live for tody and hope to see the next one my eyes are getting bad
My baby (15months) has NF1. We are just starting to see some learning delays, but so far it is just the cafe-laut spots. He is a major blessing to our lives.
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.......
Lynzee is an amazingly strong girl. I've got NF1 (I sent you a message on your youtube web page) but I am lucky enough to not have exterior tumor (as of now) I had them along my spinal colomun and it caused Scoliosis but so far that is all. If you would ever like to talk with me contact me on my youtube page/
keep up the fight, you r amazing i am one of the lucky ones 2 not have a serise tuma yet. if u would like to chat let me no and injoy my videos shaun1912
I have that
jessbritt121 1 week ago
I don't have learning disabilities...I have no problem with that. I have those cafe-au-lait spots, neurofibromas..cystic lesions in my brain, scoliosis, had early puberty and now I'm not growing anymore. I'm afraid of my children catch it from it. I don't want them to endure (there is worse, but yet) what I'm enduring. I don't want them to see in hospital, staying there for days, or seeing doctors every month, or complaining or even hurting. For a parent it's not easy to see that.
LucksterMFerPeepNCo 1 month ago
i live with NF had one remoived from sipnalcord T1-T3 doc said be for surgary i would never walk agin but with gods will iam still walking and holding down a full time job (that was back in 01) and 2 surgery same spot in 07 and still moiving my youngest has 10 of the cafe-au-lait spots but said thing is i never knew what i had intell i was 30 hadthe tumers since i as 12 finaly found a doc who knew wat she was doing
powerbullet25 6 months ago
lynzee i was also born with nf1 i have the spots and some nerofibromas but nothing serious. i was the first in my fam to have it im 23 and i have two baby girls im nots ure if they have it yet i hope they dont.
whiterabbitconley 9 months ago
I hane nf but dont remember which kind , I dont have the growths, but do have the spots.
stevenwayneowen 1 year ago
i have nf1 and i have to go to hosptial on the 1st for therpy i hate it my mum died of it
kirstyrand1 1 year ago
i have NF1
WOLFNBEAST 1 year ago
o God heal us,its so difficult to accept this condition especially when you see people around with good health,its only you who have the ans to this cure.please tommorow will too late heal us now pls GOD
ml09abg 1 year ago
Great video! I have NF1.
MrTheWitt 1 year ago
i have nf1 i used to get mri's once every year to check for tumors in my brain but now its evry two years and this year i have to get one. i just hope they can find a cure soon because u can get cancer from it, theres a 50% chance of a child to have learning disabilities when born and more. all we can do is pray
manofwonder555 2 years ago
hi i suffer from nf1 and find it hard to fit in, i have always been bullied and ridiculed on the streets, now i always wear a hoody to cover the ones on my head, its hard to find a hat that will fit. its not us that have the problem it all of you that make fun of those who are slightly different. if a child can come an ask whats wrong an then understand thats how you were born then so an adult sould understand more.
Oisinmagic 2 years ago
ignorance is all that is... inncoent ignorance for the children ... adults are kind of a catch 22... they could be curious or cruel.... and it sucks
SweetBrwnSuga 2 years ago
i have nf1 is sucks !!!!
kirstyrand1 2 years ago
i do 2, and hey God will see you through it. I promise.
SweetBrwnSuga 2 years ago
minha irma e portadora da deficiencia mas nada disso fez com ela se deixasse levar pelas aparencia!!! eu aconcelho pra que tem a doença peÇa pra DEUS lher dar foças POR QUE TUDO EU POSSO NAQUELE QUE ME FORTALECE!!!!!
cianeamelhor 2 years ago
I dont know if I have NF1, I have recently been diagnosed with scoliosis and my doctor saw obvious cafe au lait patches should I worry about this anyhelp such appreciated :)
ShimmerySparklyLuvv 2 years ago
Don't worry until your doctor confirms it.
SweetBrwnSuga 2 years ago
i have NF1 and i would like to help people who would like more info on this as i know most things about NF1 and only NF1 as this is what i have done research on
Millsyhibs 2 years ago
I feel sorry for people who have NF
:(
ClosedHearts 2 years ago
dont feel sorry for us we will make it through and the love of friends and family and our faith but insteed support our causes and help us find a cure
portson78 2 years ago
im 16 and have mild nf ... mostly just cafe-laut spots ... didnt have any problems so far thank god ! always feel sorry for those who do .... hopefully there'l be a cure soon
xoxash123xox 2 years ago
I too have Nf1, I have spots, freckles, lumps, continuous headache, backache. I'm looking for someone to described.
ewelkagrz 2 years ago
so do i... what did u mean by ... looking for someone to described...?
SweetBrwnSuga 2 years ago
my Bf has it... =( but despite the fact that he does have it he is honestly an amazing person and i think he is really mature with how he's dealt with it... he goes for surgery on his ear July 2 for something that has to do with it and he has a cyst on the side of his like cheek and they are gonna put him through a scientific thing.. please pray for him.. His name is Kevin Bickerdike and he is an amazing person... thanks <3
Azhlizzle 2 years ago
how did things go for him?
SweetBrwnSuga 2 years ago
I always hope to have Mso, solution
I with. NF .. can always be worse, but scary to live in fear this could always be worse and any traces that we have, very difficult to onerous
engel8831 2 years ago
I have nf 1. as do many who watch this video, i have been afraid incase in the future i would pass it on to my children when i have the, but now the gene can be removed from female eggs so it can be stopped from being passed on :)
Vintagebaby07 2 years ago
hey i have nf1 too and im ok with it even though i have to go see the doctor alot but my friends dont care that i have it
redsoxsuckhaha 2 years ago
i am stronger than my desase , i got an ilness but i am not ill!here there is a lot of pepole crying becouse they got an ilness, as i used to do. i was benn thinking a lot of time abaout it. is not the pepole who was been agaist me, it was been me who was against i My wish, dont have compassion about me.
ikerbeast666 2 years ago
wow! you have inspired me! really you REALLY have! :+)
SweetBrwnSuga 2 years ago
i have this i am 14 and mi mum died of it when i was 4 but 2 everyone who has dis there are always some good days that follow the bad so keep smiling everythink will e allrite
kirstyrand1 2 years ago
I;m so sorry for your loss...I had it since i was a little girl..... is this a deadly disease?
altargirl9 2 years ago
not exactly. i too have had it since i was a little girl.
SweetBrwnSuga 2 years ago
i have nf it is in the back of my eyes and in my ear. i do not know what is going to happen to me so i live for tody and hope to see the next one my eyes are getting bad
alanlogan111 3 years ago
My baby (15months) has NF1. We are just starting to see some learning delays, but so far it is just the cafe-laut spots. He is a major blessing to our lives.
gregncorisa 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
thanks for the nice video. I have nf1
Hang in there all....we could have it a lot worse. Most of us can lead normal lives.
I pray for those who have it rougher.
rushdude67 3 years ago
my name is avery im 15 and i have nf1 i would not curse it on enybody
ilikefriedfood 3 years ago
hola soy de spain y tengo la nf1.
saludos
yomuso 3 years ago
MY name is terry i am 36 year old and i have nf type 1.
i love your video
deathwish35 3 years ago
I have nf1 too
monkeysgirl8 3 years ago
Congratulation, this video explains very well the NF! Maybe you know me I wrote a NF poem:
" The Naughty Little toad " You can find it on internet Kind regards Francis
vilainpetitcrapaud 3 years ago
i just found it on wikipedia, its inspiring! Thanks.
SweetBrwnSuga 2 years ago
Hi Lynzee its Katie
How are you to me you are a very good friend and a strong fighter and away been very happy talk to you soon
Great video
Katie X
PinKWingSAngeL 4 years ago
Lynzee is an amazingly strong girl. I've got NF1 (I sent you a message on your youtube web page) but I am lucky enough to not have exterior tumor (as of now) I had them along my spinal colomun and it caused Scoliosis but so far that is all. If you would ever like to talk with me contact me on my youtube page/
whoalillowe 4 years ago
keep up the fight, you r amazing i am one of the lucky ones 2 not have a serise tuma yet. if u would like to chat let me no and injoy my videos shaun1912
shaun1912 4 years ago
Lynzee... you rock! KL from the CTF bb
SeaMowse 4 years ago