like this comment if you wish that there was a celebrity with NF1 so people with it woulnt feel so ugly and wouldnt be laughed at or made fun of for it!
@sledgehammer7891 i have the same im 13 but i dont have a enlarged head dont be afraid. we have nothing to hide. the scoliosis has never bothered me and never will the nf1 might in the futcha. but just keep ur chin up up :)
I have NF 1 along with Hydrocephalus, I hate it; half the stuff in this video I didn’t know and I am 28 so when they say most of us die young how young is young, 10 operations for the hydrocephalus and 5+ for the NF. I think Hydrocephalus will be what kills me, but hydrocephalus is from the NF 1 so in a way I would die from the NF as a result from the hydrocephalus. DAMB THIS SUCKS I would not wish this on any one, I am NOT having kids I will adopt this way I know I won’t pass on the gene.
i also have nf n it pisses me off when ppl say its a disease its a genetic disorder,but none of my parents have it. im lucky enough not to have any tumors or growths just the cafe-au-late patches they vary in size and some are darker than others, doctors always said they were birth marks :s wasn't until i was in primary 2 or 3 that my parents found out what they actually were
@TheSheppie1 I got my NF 1 from my mom my older sister and younger brother does not have it, my moms NF got worse with having us kids. I don’t want mine to get worse I’m not having kids I don’t want to pass it on…
i have type 1 of this and most of what you said is wrong
1. you did state that there are 2 types, both completly different
2.it doestn matter if they grow on your face, you may go death or blind if they grow on the nerves that connect to your ears/eyes
3.only people with NF1 get the cafe-au-lait spots
4. people with NF1 usually life to a NORMAL age, some may die younger as people with this sometimes (depending on there DIET) develop high blood pressure but its defentlty not 100% not half
again, why must you use the very worse cases, most people with NF have few problems , and growths , the pictures you show are rare , stop trying to scare people , and if any of you have just been been told you have NF, , or have a child that has been , dont be afraid, 9 of my bothers ans sisters have this , including myself , i have brain and spinal tumers and a deformed spine , but have lived a pretty normal life , as has the rest of my family and i am one of the worse of them , will be 49
@lucrene1112 I agree. I had no idea I even had NF until last year at about this same time when a football sized tumor was found on my spine. I am 51 and from as far back as I can remember I have had the cafe-au-lait spots, we always just thought they were birthmarks. The tumors are not always on the face or noticeable. I have a lot of small growths on my chest and stomach that have increased in number the older I get. People with NF can lead fairly normal lives.
@tomdaltodmom you went along time before being found out, you dont have to have NF in your family , sounds like you were a sudden mutation ...and you can get a tumor anywhere you have a nerve ending , good that people are leaving comments that most of the time NF is not like what is shown here... we look pretty normal , short maybe, bigger heads sometimes , bone problems and tumors , from brain to stomach ,
For those of you taking offense to NF being called a disease. By it's alternative name it is a disease. No two ways to split it. When you call it von Recklinghausens disease it's right there in the name, so why get mad? I've always had it referred to as a disease since I was a kid and that was back in the 80's. It doesn't bother me. The only thing that does is the constant stares from strangers. I feel like this. if you have any questions, just ask. Having NF is nothing to be ashamed of.
@jetsfan4life stared at ,, you must be covered with tumors, two of my brothers are, and my oldest sister who died from adrenal cancer, connected to NF was coverd also , people can be rude, no its not catching , even in my family. we are split, the NFers and the nonNFers, who instead of thanking God that they didnt get this one gene , think they are somehow better
@lucrene1112 Not really, the largest tumor I had was on the right side of my nose and I had that removed when I was 13, but people still tend to stare at what they think is different. My NF was a mutation, no one else in my family has it. I have a scar where my tumor used to be and people especially children growing up didn't make it easy to want to go to school. Adults weren't any better though, sometimes not even the ones that I'm related to.
most people dont understand the emotional stress we go through every day especialy during HS trying to fit in and being excluded from certaint activities because of a surgery you had when you were littel and not knowingif a girl you like will still appreciate you after you tell her about having NF and how your classmates will treat you for having NF
why show the worst and scare people .?? ...have NF is does 8 of my brothers and sisters ,,...have childhood brain cancer from it ,,,am 48 now ,,,please visit my page ,...
It looks like someone's heart was in the right place in making this video but it has quite a few inaccuracies or misstatements. Many people here have responded to this video emotionally which is not surprising since NF is an emotional issue. My family has NF2 in it and I understand how sensative the issue is. Still no reason to attack whoever mad the video. Some people here need to refocus their hostile energy
1. NOT a disease. 2. All cases range from just spots and migranes all the way to learning problems, siezures, and tumors. 3. There are 2 types you did not specify. 4. It is NOT detected when a baby is born. A family member may have this and he is almost 2 and the doctors had no idea! 5. Type 2 is not seen till puberty hits. FAIL!
and the cafe-au-late spots I have a special make up to hide them because most are in my legs so I hate wearing shorts so it's not all bad and it's kinda nice to no that it's not only me that has this but it feels like it's only you.I HATE them (cafe-au-late spots)
ok A it is not a disease B i am almost 20 and not dead yet C it is not all way deteacted at birth some of us are deteacted as babys but others (ppl i know) dont get detecated till l8er in life but other then that i think u got it almost right but i dont realy find it offence but i think u need to re edit it to get the rong bits out.
half of people with NF will experience a death at a young age? were did you get your facts for this? fool. ive had it all my life and im now almost 20. and i have been fine.
@Liontail100 It is not a disease trust me i have it I know a lot of people who do. The majority of those who call it a disease are the stuffy doctor type who did not take the time to research it beyond college biology. Please do not take offense to my comment, the whole disease debate is one of my soap boxes. It also largely depends on perception and I refuse ot give NF that much power by calling it a disease.
@TheBlueMeadow It CAN be deadly. How is it offensive? I have it myself-though I'm not saying you do or don't-and I find it nowhere near offensive. Most of the facts are correct. I'm glad someone actually(and hopefully) took their time to do the research and enjoyed learning about it.
I have NF. I can tell you that it is not at all a deadly disease. I know much about it as I was diagnosed as an infant. Also the tumors don't only effect vision when growing on the face. They can grow internally in the brain or even on the eyes. For a small, but exaggerated, presentation, the information is fairly accurate.
I'm doing a biology project about NF as well. Are you sure that "half of the people with NF will experience death at young age"? How do you define "young age" and where do the statistics come from? Are you referring to NF1 or NF2?
I have n.f but my tumors are never large than an olive - i have down many surgery and they were successful just a few scars. however after watching this it made me become fearful about my condition. is that really facts? where did those statistics come from?
i have NF 1 i dont eaven think about being affected by it.other than being dyslexic and having ADHD. I do have 2 keep a close watch on bumps on my back. I dont know what to say when others ask about my cafe o laut spots, when others ask i tell them they are birthmarks.i mean it would be soo soicaly akward 2 sazy well i have NF type 1 blah bla .. anyhways thanks 4 the vid. it makes me gratefull im healthy and alive <3
Shut the fuck up. If you can't read that this is a project I did for my biology class in tenth grade, then I think you may have more illnesses than NF. You probably have Down Syndrome or some type of mental retardation for posting such stupid comments. If you find this video offensive, please feel free to go fuck yourself.
My stepsister thinks its offensive not me. Im luck and dont have NF myself but my stepsister dose she is 14 and finding it hard at school because of it, and i think its sad that you call people by saying that they have Down Syndrome or mental retardation just because they found something offensive!!!!!!!
@gabriels107 You don't need to be calling him or her retarded. That just ruins the whole point of the project. Even if I or someone else don't find it offensive, she/he does so you should just accept it.
@gabriels107 really? ur a jerk who gets off on the anger of others, the anger caused by ur offensive video! Do u have it? If not u need to shut the fuck up! u want to have tumors all over ur body? You need to show some respect for those that have to live with this!!!
@lilmizhotpants It's not offensive. I have NF so I would know. She did a WONDERFUL job(not kidding). She got all the facts straight and the pictures reminded me of how lucky I am.
@lilmizhotpants shut youd fucking mouth how the hell i this offensive hes telling the facts and how its spread and i hve this disease and i dont find it offensive the only one who sounds offensive if you being an ignorant asshole so before you say anything get you head out of your ass
Where do you get your facts from? I have NF1 and have some of the tumors, but I was affected mentally - my oldest son is 8 and has it, he has massive learning disorders, my youngest is affected also he might have hearing loss; he has the cafe o lauit spots, no tumors yet. But before you make a video make sure you know the facts. I have ADHD, my oldest son has asburger syndrome. It is a part of the NF. Reasearch is key. This is offensive.
I have this and i had one removed on my lift buttack. It was hurting one day after i had it removed and i went to rub it and it opened on me and i was sreced becouse i hurd that i could bleed to death and i had to let it hell form the in side out and now i have a hole like and now it come back bigger. and sometimes it hurts to walk or sit for a long time
NF is not that deadly and most people with it experience only mild symptoms and live normal and productive lives. you said that half of all NF patients die at a young age. this is NOT true
@kristoffk9 - ACTUALLY no most people with NF dont die of evil tumors. That can be the common cause of death in these patients but this is often rarer than we think. There are two forms of NF. NF1 and NF2. Some people with NF1 live their entire lives not knowing they have it. Go to the Mayo Clinic site and search for it. They have great info!
I think it's a very simple video because it only shows all the extreme cases of NF. I do know that these pictures are reality for many people but it doesn't give people a very scientific idea of the disease. It's not as dangerous as it appears on the video. The tumors can be reduced or even removed totally. Many of the NF-patients have mental symptoms as well and not necessarily any visible tumors.
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 havanother 1..my leg is not like other kids legs.i go though horrible depression sumtimes n i cnt join anysports 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
thank you for making a video for the poor people that suffer from NF. I am 14 years young and i maybe diagnosed with NF with the cafe au lait spots. its nerve recing to think about it. but i know what people are going trough because my aunt has it. and as me and her say "NF does not define who a person is, it makes them stronger and more determined to achieve their goals! They will not hide and will show their "puzzle pieces" with pride until we find a cure.NF is something that you are born with
@AllieandFriendz I don't know if you can or not. I have those spots, fibromas all over my back and stomach, and they are moveing towrds my neck. I also have a bowed tiba and a slightly curved spine...but its so small of a curve its not noticble.
everything i hear about nf is depressing. i have it also and despite the smartest docs giving me a prognosis about being dumb, blind and deaf, i became a pediatrician. THIS IS NOT A DEATH SENTENCE. we can beat this. look into the promising effects of light therapy to start and have your congressman support Dept of Defense funding of NF research. it is such a shame that after all these decades, there is still no cure, or treatment.
@lililuvsyuni16 There is a cure and it is up to us to find it. There are healing sound frequencies, like 526Hz that repairs DNA mutations. There are so many antioxidants in natural foods, especially soursop, kmown to be more effective than chemo. the spice curry also has anticancer properties.
We must find out why some progress more than others.
Don't let others' perception of you determine your perception of yourself. Watch The Secret and view yourself as you want to see you.
i have tumers on my nerivs and i had one be hind my ear that was removed but it might come back. NF is something you dont joke about it. soo if anyone is joking about pls dont. i have NF1 they found it when i was 4 months old.
the sprit is some thing no man can crush if you are strong enough always remember what people if its bad they have a asshole just like me if they are poliite and have a good hart kool i have a new friend
yes people are very rude about it, I wore shorts to school a few times and got amde fun of for having brown spots on my legs got kicked and called dirty for not washing. Life is hard with it but I feel it has made me stong as a person.
I have NF1 and showed this to my friends so they could understand the condition better. Unfortunatly,many people don't understand this condition and are often rude about it.
i also have nf. and thankfully mine arnt as bad as the ones in these pictures, but i do have one on my face. and i have another one on both my arms, i dont really have those brown spots but i do have a few. kinda sucks, but its what ever, i still live a normal life.
todos los que marcais mis comentario anterior como negativo lo primero que teneis es que sufrir esa enfermedad y despues pedirle a vuestro amigo imaginario que os la quite a ver si os escucha. Abrid los ojos
I have Nf1 and am 17. i have fibromas all over my back and stomach, one on each arm...and are devloping some on my neck. Iv been told that waht i have is gross. Iv been made fun of since i have a brace on my leg and limp. Im not allowed to do sports or even run. but despite all that, im happy. Iv learned to live with it. and iv learned not to notice the stares.
i have nf, people just try to stay away from me I HATE IT my bigges wish is to just turn into someone else, i got one in my face but had it removed in 1st grade i also have one in my back arm and neck. i am still jubg (13) and hope there will be a cure.
@jessbritt121 Don't ever give up. I use to hate the Creator, especially after believing what my own family members told me about being cursed by God. kept thinking why me. My NF is progressing and i still have to convince others that i don't have chicken pox. Now i thank the Creator for turning this tribulation into a blessing, because I am one of the most compassionate people I know. Those of us with NF must be the ones to cure it, but you need a source of hope, a light.
i just wanna say NF is not deadly if it is the most serious case out there with tumors in the chest then yes it can be deadly but most children will not die at a young age from it
i am 27 and am marrying someone who has nf type 2, i am trying to convince him that having kids would be better than not having kids,what are youre oppinions?
HI loveless2198 i have nf1 and have 2 kids first child was ok but second child got nf also i suggest u before planing for children discuss it with a doctor
I seriously recomend getting an adoption or a sperm donation.. doctors recomended it to me when im older. but a guy with nf2..ehh thats not gona be pretty.. but idk.. your genes might be domonint. ... but if you don't want a kid with Nf i seriously don't recomend your husbands sperm,
i Have nf although not physical apperance is affected apart from a few raised lumps on my face ive had internal problems, when i was 13 i had a kidnney transplant due to a shortining of the main vein leading to the kiddney, apart from that ive been fine but the older i get the more lumps are appearing
Thank you!!!! I am 27 now and i am a part of that 50% that will die at a young age, I have a NF tumor (not cancer) in a place they can nt cut into to remove... so has is grows, I am dieing..... Nf is no joke, you luck y few who have Nf and still are like the normal people.... Please just dont have your own kids... everyone has Nf different and your child could be like me or worse.....
sum one please tell me yes or no if there is ever going to be a cure for Nf if tehy do find a cure wat wud they cure some of it part of it or all of it
my son (now 4) has NF1 he was diagnosed at 2 years old...he has the spots on his stomach...he also has Autism (im wondering if the autism is the learning disorder - one of the side affects)
stay strong people and try to live life to the fullest.
1. NF is not a disease is a desorderd who causes diseases
2 NF has no cure,but we can save our childrens with the enburion selection
3 i am 18 i am not dead. i had never had a suregy and my life expectance is a bit shorter than the normar (becouse i got mor risk to suffer a tumor) but it is around th 72 mol. so it is NOT a disaese and is NOT deadly
first of all get your fuckin facts str8 I have NF1 it is a DIESEASE! and you can't prove it not to do....it has killed people many times....I nearly died from it...just cause your lucky to be more normal than most people does not make it a non-diesease issue...it is and shall remain a diesease....hence why there is NO CURE!
Pepole dies of tumors, gliomas , cancers caused by NF, but NF itself is not deadly . only the 33% of people with NF has important toumors. NF is not disease is a genetic disorder (caused by an anormal protein on a single gen) who causes diseaseas. the soul is just an idea caused by the mind , that is just a complex sistem of chemical reactions in your brain.
hi i to have N.F type 1 i was always told it was a genetic disorder due to a faulty gene i have lots of problems from it more then i can count small lumps witch are sort of numb and 1 large peripheral nerve tumor, neurofibroma at the top of my arm and coffee colored birth marks all over and loads more hope we can chat ad love to find out how other people handle and there problems
They tell me that I'm fine BUT I WANT 2 SAY I'M PRETTY NOT THEM BUT ME. And its hard for them 2 understand that so IF U KNOW A GOOD EYE SURGEON THAT CAN HELP ME PLEASE SEND ME A MESSAGE OF THEIR WEBSITE thanks =]
I wish teachers can teach this in school so students can know about dis because I been through so much HELL with other students with my condition of my eye. I'm now an high school graduate and its still hard for me 2 feel good about myself. I hate the way I look and I hate taking pictures with my friends,family, and boyfriend.
I also have NF and I had it since i was a baby. I been through ALOT of surgeries I have the brownish colored spots, I had scoloisis, I have a tumor in my left eye, and I have an learning disablity. I had at least 3 surgries to try 2 get my left eye 2 look normal like the other but it always droop back as it was before. When I was 10 I got surgrey 2 get a metal rod 2 be put in my back for my scolosis.
i live in the uk and also have nf1, constant pain and head aches, always tired and have sleep problems, im dislexic have a big tumor on my right arm that they wont operate on i get constant stares and comments made to me making it hard to go out. with all this i get no help from the government or benefits. is anyone else in the same possition and cant get the help they need, if anyone has a solution in getting support please contact me.
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 he pepole who was been agaist me, it was been me who was against i
Um HELLO YOU JACKASS! If you think i'm sitting around moping your out of your fucking mind! and saying your stronger than your illness and your not ill and yet you have the number of the beast in your name....you are very ill...Jesus is my reason for fighting on....Jesus is my lord and saviour...and God is the beggining and the end....you sir....are pathetic.....
first of all...take kindergarden english again....second of all....where did your SOUL come from then? And God is very real.....I only hope you see HIS light you fuckin moron!
Thank you for being pretty much on target for something you probably knew nothing about b4 hand. Our son was diagnosed at 2 but we knew something was up when he was born becuz he had so many spots. He has NF1.
Hi Rob, I have NF too...and like you, It wasn't discovered till i was 3, ...guess it's that they don't discover it until they have a reason to look for it.
Wow....you sure did your research on NF....Im impressed....( I only say this cause I have NF Type 1). What about the spinal part of NF? You seem to have left that one out....but still I'd give you an A++ for your work! Just make sure people don't think its contagious ;)
I have NF1 and pseudoarthosis of the tibia. I lost my leg to it after many failed operations, braces, cast, pins, rods, fixaters, the bone never mends once it breaks as mine did in a cast at 8 months old. I had many painful operations 17 in all that only lead to a bone infection.
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 he pepole who was been agaist me, it was been me who was against i
i had one of the tumors in my brain removed in sep 08 they were so sure it was cancer it was so scary lucky for me it was not but it has left me half blind and because of that i was fired my manager did not want to work with disabled people and they were her exact words
like this comment if you wish that there was a celebrity with NF1 so people with it woulnt feel so ugly and wouldnt be laughed at or made fun of for it!
i do and i have NF1
bluenails98 1 week ago
i have nf1 and i have an enlarged head and scolios (or how ever u spell it) and im afraid im gunna get cancer too :( im only 14
sledgehammer7891 1 month ago
@sledgehammer7891 i have the same im 13 but i dont have a enlarged head dont be afraid. we have nothing to hide. the scoliosis has never bothered me and never will the nf1 might in the futcha. but just keep ur chin up up :)
coolladdy101 1 month ago
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TotalRandomness1997 1 month ago
thanks for for this. Just found out i got NF 1
miinsaa 1 month ago
i got nf 1 and all i say dont let it stop you
DoomkittyRevenge 1 month ago
I'm scared now to :( I didn't no half of this I have NF 1 :( I don't want kids any more :(
holdentv1 1 month ago
I have NF 1 along with Hydrocephalus, I hate it; half the stuff in this video I didn’t know and I am 28 so when they say most of us die young how young is young, 10 operations for the hydrocephalus and 5+ for the NF. I think Hydrocephalus will be what kills me, but hydrocephalus is from the NF 1 so in a way I would die from the NF as a result from the hydrocephalus. DAMB THIS SUCKS I would not wish this on any one, I am NOT having kids I will adopt this way I know I won’t pass on the gene.
ReturnToSender83 2 months ago
@ReturnToSender83 then you can adopt a child with NF , it is not always genetic , can be a sudden mutation , anyone can have a child with NF
lucrene1112 1 month ago
i also have nf n it pisses me off when ppl say its a disease its a genetic disorder,but none of my parents have it. im lucky enough not to have any tumors or growths just the cafe-au-late patches they vary in size and some are darker than others, doctors always said they were birth marks :s wasn't until i was in primary 2 or 3 that my parents found out what they actually were
TheSheppie1 3 months ago
@TheSheppie1 I got my NF 1 from my mom my older sister and younger brother does not have it, my moms NF got worse with having us kids. I don’t want mine to get worse I’m not having kids I don’t want to pass it on…
ReturnToSender83 2 months ago
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TheSheppie1 3 months ago
part 2
5, it is not deteced at birth it is at 3-16 years
6. not marks
everyone is laughed at, nobody has ever said anything to me, they think i have birth
learn your facts before you make this shit
thesoullessbeasts 3 months ago
i have type 1 of this and most of what you said is wrong
1. you did state that there are 2 types, both completly different
2.it doestn matter if they grow on your face, you may go death or blind if they grow on the nerves that connect to your ears/eyes
3.only people with NF1 get the cafe-au-lait spots
4. people with NF1 usually life to a NORMAL age, some may die younger as people with this sometimes (depending on there DIET) develop high blood pressure but its defentlty not 100% not half
thesoullessbeasts 3 months ago
There are people with multiple cafe au lait (more than 6) spots without neurofibromatosis by the way.
AskariWaryaa 4 months ago
again, why must you use the very worse cases, most people with NF have few problems , and growths , the pictures you show are rare , stop trying to scare people , and if any of you have just been been told you have NF, , or have a child that has been , dont be afraid, 9 of my bothers ans sisters have this , including myself , i have brain and spinal tumers and a deformed spine , but have lived a pretty normal life , as has the rest of my family and i am one of the worse of them , will be 49
lucrene1112 4 months ago
@lucrene1112 I agree. I had no idea I even had NF until last year at about this same time when a football sized tumor was found on my spine. I am 51 and from as far back as I can remember I have had the cafe-au-lait spots, we always just thought they were birthmarks. The tumors are not always on the face or noticeable. I have a lot of small growths on my chest and stomach that have increased in number the older I get. People with NF can lead fairly normal lives.
tomdaltodmom 1 month ago
@tomdaltodmom you went along time before being found out, you dont have to have NF in your family , sounds like you were a sudden mutation ...and you can get a tumor anywhere you have a nerve ending , good that people are leaving comments that most of the time NF is not like what is shown here... we look pretty normal , short maybe, bigger heads sometimes , bone problems and tumors , from brain to stomach ,
lucrene1112 1 month ago
@Ninetybean
NF is also known as von Recklinghausen's DISEASE buddy. Sure seems like a disease don't you think?
bigdaddycuba 5 months ago
For those of you taking offense to NF being called a disease. By it's alternative name it is a disease. No two ways to split it. When you call it von Recklinghausens disease it's right there in the name, so why get mad? I've always had it referred to as a disease since I was a kid and that was back in the 80's. It doesn't bother me. The only thing that does is the constant stares from strangers. I feel like this. if you have any questions, just ask. Having NF is nothing to be ashamed of.
jetsfan4life 5 months ago in playlist PT20A
@jetsfan4life stared at ,, you must be covered with tumors, two of my brothers are, and my oldest sister who died from adrenal cancer, connected to NF was coverd also , people can be rude, no its not catching , even in my family. we are split, the NFers and the nonNFers, who instead of thanking God that they didnt get this one gene , think they are somehow better
lucrene1112 1 month ago
@lucrene1112 Not really, the largest tumor I had was on the right side of my nose and I had that removed when I was 13, but people still tend to stare at what they think is different. My NF was a mutation, no one else in my family has it. I have a scar where my tumor used to be and people especially children growing up didn't make it easy to want to go to school. Adults weren't any better though, sometimes not even the ones that I'm related to.
jetsfan4life 1 month ago
lol
rastadood1234 6 months ago
flagged for terrorism?
udungoofedderp 6 months ago
@SuperBcp1 thank you I am the only one in my town with nf so I always stick out every were I
Go
Dmac61897 8 months ago 2
most people dont understand the emotional stress we go through every day especialy during HS trying to fit in and being excluded from certaint activities because of a surgery you had when you were littel and not knowingif a girl you like will still appreciate you after you tell her about having NF and how your classmates will treat you for having NF
SuperBcp1 8 months ago
shut the fuck up i have Nf myself and i am 20 and i dont find this video offensive at all.
Lr250789 8 months ago
why show the worst and scare people .?? ...have NF is does 8 of my brothers and sisters ,,...have childhood brain cancer from it ,,,am 48 now ,,,please visit my page ,...
lucrene1112 9 months ago
It looks like someone's heart was in the right place in making this video but it has quite a few inaccuracies or misstatements. Many people here have responded to this video emotionally which is not surprising since NF is an emotional issue. My family has NF2 in it and I understand how sensative the issue is. Still no reason to attack whoever mad the video. Some people here need to refocus their hostile energy
fatherandsun 9 months ago
1. NOT a disease. 2. All cases range from just spots and migranes all the way to learning problems, siezures, and tumors. 3. There are 2 types you did not specify. 4. It is NOT detected when a baby is born. A family member may have this and he is almost 2 and the doctors had no idea! 5. Type 2 is not seen till puberty hits. FAIL!
ChibiOsaka21 10 months ago 2
and the cafe-au-late spots I have a special make up to hide them because most are in my legs so I hate wearing shorts so it's not all bad and it's kinda nice to no that it's not only me that has this but it feels like it's only you.I HATE them (cafe-au-late spots)
jadecaie123 10 months ago
@Kingelf3 me two but I am 15 and I have the cafe-au-late one and I have tones and I hate them and cried at the fact that I thought I would die.
Plz edit ur vid it's not all true. Thanks xx
jadecaie123 10 months ago
ok A it is not a disease B i am almost 20 and not dead yet C it is not all way deteacted at birth some of us are deteacted as babys but others (ppl i know) dont get detecated till l8er in life but other then that i think u got it almost right but i dont realy find it offence but i think u need to re edit it to get the rong bits out.
p.s in case u haven guest i have NF
kingelf3 10 months ago
half of people with NF will experience a death at a young age? were did you get your facts for this? fool. ive had it all my life and im now almost 20. and i have been fine.
bullbrooke 11 months ago 2
i has neurofibromatosis and hve cafeolae spots, just curious is add cause by this?
foxmcloud23 11 months ago
@foxmcloud23 i hear it does it sum cases but not all but thats what a website told me so im not 100% sure
sexystud90 9 months ago
@Ninetybean I've always been told it's a disease(I have it and have asked about it a whole bunch. I've also researched).
Liontail100 11 months ago
@Liontail100 It is not a disease trust me i have it I know a lot of people who do. The majority of those who call it a disease are the stuffy doctor type who did not take the time to research it beyond college biology. Please do not take offense to my comment, the whole disease debate is one of my soap boxes. It also largely depends on perception and I refuse ot give NF that much power by calling it a disease.
Joesphfffffff 9 months ago
This has been flagged as spam show
you are fucking..not all NF is deadly. i also have NF,so you don't scare with anyone have a NF.
cpot85 11 months ago
This has been flagged as spam show
you are fucking..not all NF is deadly. i also have NF,so you don't scare with anyone have a NF.
cpot85 11 months ago
This has been flagged as spam show
you are fucking..not all NF is deadly. i also have NF,so you don't scare with anyone have a NF.
cpot85 11 months ago
Your a fucking prick this is offensive! And its not all deadly! U need to shut up if u dont know what its about!
TheBlueMeadow 1 year ago
@TheBlueMeadow It CAN be deadly. How is it offensive? I have it myself-though I'm not saying you do or don't-and I find it nowhere near offensive. Most of the facts are correct. I'm glad someone actually(and hopefully) took their time to do the research and enjoyed learning about it.
Liontail100 11 months ago
what is the name of the song?
peloton76 1 year ago
I might use this video on a webpage I'm crteating OK!
MrTheWitt 1 year ago
i have it and its bad thats all i have to say
kazumazkan 1 year ago
I have NF. I can tell you that it is not at all a deadly disease. I know much about it as I was diagnosed as an infant. Also the tumors don't only effect vision when growing on the face. They can grow internally in the brain or even on the eyes. For a small, but exaggerated, presentation, the information is fairly accurate.
kmb0807 1 year ago
I'm doing a biology project about NF as well. Are you sure that "half of the people with NF will experience death at young age"? How do you define "young age" and where do the statistics come from? Are you referring to NF1 or NF2?
jackpot8192 1 year ago
@jackpot8192 i have type 1 and had 2 friends who passed away from cancer related NF who were only 16
SuperBcp1 8 months ago
I alway understood tha NF is not deadly??
Rudewomantt 1 year ago
@Rudewomantt as far as i know its not in extremly rare cases the tumors become cancerous and people die due to the cancerous tumors
delilahrock10777 1 year ago
kool
whooseyerdaddy 1 year ago
I have n.f but my tumors are never large than an olive - i have down many surgery and they were successful just a few scars. however after watching this it made me become fearful about my condition. is that really facts? where did those statistics come from?
SuperSkyQueen 1 year ago
i have NF 1 i dont eaven think about being affected by it.other than being dyslexic and having ADHD. I do have 2 keep a close watch on bumps on my back. I dont know what to say when others ask about my cafe o laut spots, when others ask i tell them they are birthmarks.i mean it would be soo soicaly akward 2 sazy well i have NF type 1 blah bla .. anyhways thanks 4 the vid. it makes me gratefull im healthy and alive <3
camiecane 1 year ago
This comment has received too many negative votes show
THIS VIDEO IS OFFENSIVE, UNLESS YOUR A DOCTOR OR HAVE NEUROFIBROMATOSIS YOUR SELF KEEP YOU TRAP SHUT!!!
lilmizhotpants 1 year ago
@lilmizhotpants
Shut the fuck up. If you can't read that this is a project I did for my biology class in tenth grade, then I think you may have more illnesses than NF. You probably have Down Syndrome or some type of mental retardation for posting such stupid comments. If you find this video offensive, please feel free to go fuck yourself.
gabriels107 1 year ago 25
@gabriels107
My stepsister thinks its offensive not me. Im luck and dont have NF myself but my stepsister dose she is 14 and finding it hard at school because of it, and i think its sad that you call people by saying that they have Down Syndrome or mental retardation just because they found something offensive!!!!!!!
lilmizhotpants 1 year ago
@gabriels107 You don't need to be calling him or her retarded. That just ruins the whole point of the project. Even if I or someone else don't find it offensive, she/he does so you should just accept it.
Liontail100 11 months ago
@gabriels107 really? ur a jerk who gets off on the anger of others, the anger caused by ur offensive video! Do u have it? If not u need to shut the fuck up! u want to have tumors all over ur body? You need to show some respect for those that have to live with this!!!
TheBlueMeadow 11 months ago
@gabriels107 I have N.F and am not offended but you should not call someone mentally retarded.
mamasmurf1o1 6 months ago
@lilmizhotpants It's not offensive. I have NF so I would know. She did a WONDERFUL job(not kidding). She got all the facts straight and the pictures reminded me of how lucky I am.
Liontail100 11 months ago
@lilmizhotpants shut youd fucking mouth how the hell i this offensive hes telling the facts and how its spread and i hve this disease and i dont find it offensive the only one who sounds offensive if you being an ignorant asshole so before you say anything get you head out of your ass
foxmcloud23 3 months ago
Where do you get your facts from? I have NF1 and have some of the tumors, but I was affected mentally - my oldest son is 8 and has it, he has massive learning disorders, my youngest is affected also he might have hearing loss; he has the cafe o lauit spots, no tumors yet. But before you make a video make sure you know the facts. I have ADHD, my oldest son has asburger syndrome. It is a part of the NF. Reasearch is key. This is offensive.
generationkill791 1 year ago
Why can't you get it removed before it grows too big? Why let it get that big?
Amber1ize 1 year ago
This has been flagged as spam show
@Ninetybean
Hi im brittany. i have NF1
and i want to make a difference.
please join my faceook page called ' help brittany burgin raise awareness for NF.
jessbritt121 1 year ago
I have this and i had one removed on my lift buttack. It was hurting one day after i had it removed and i went to rub it and it opened on me and i was sreced becouse i hurd that i could bleed to death and i had to let it hell form the in side out and now i have a hole like and now it come back bigger. and sometimes it hurts to walk or sit for a long time
angellafreeman 1 year ago
@angellafreeman
Hi im brittany. i have NF1
and i want to make a difference.
please join my faceook page called ' help brittany burgin raise awareness for NF.
jessbritt121 1 year ago
NF is not that deadly and most people with it experience only mild symptoms and live normal and productive lives. you said that half of all NF patients die at a young age. this is NOT true
WOLFNBEAST 1 year ago
@WOLFNBEAST
most people with NF die of evil diverse tumor in they brain and in you back
kristoffk9 1 year ago
@kristoffk9 - ACTUALLY no most people with NF dont die of evil tumors. That can be the common cause of death in these patients but this is often rarer than we think. There are two forms of NF. NF1 and NF2. Some people with NF1 live their entire lives not knowing they have it. Go to the Mayo Clinic site and search for it. They have great info!
LuvMyKeegsNGray 1 year ago
@LuvMyKeegsNGray okay but i haved a friend whit the same name as my name and hi daied by a evil diverse tumor in his brain and hi had NF
kristoffk9 1 year ago
I think it's a very simple video because it only shows all the extreme cases of NF. I do know that these pictures are reality for many people but it doesn't give people a very scientific idea of the disease. It's not as dangerous as it appears on the video. The tumors can be reduced or even removed totally. Many of the NF-patients have mental symptoms as well and not necessarily any visible tumors.
elipaafarten 1 year ago
There not just nf-1 People there is also nf-2 which is just as deadly. just putting it out there.
mrm3895 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 havanother 1..my leg is not like other kids legs.i go though horrible depression sumtimes n i cnt join anysports 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
i have those around my body
MustLoveJennettte 1 year ago
thank you for making a video for the poor people that suffer from NF. I am 14 years young and i maybe diagnosed with NF with the cafe au lait spots. its nerve recing to think about it. but i know what people are going trough because my aunt has it. and as me and her say "NF does not define who a person is, it makes them stronger and more determined to achieve their goals! They will not hide and will show their "puzzle pieces" with pride until we find a cure.NF is something that you are born with
Amber5683 1 year ago
i just have the cafe au lait spots thats it do u know if u can get them removed?
AllieandFriendz 1 year ago
@AllieandFriendz there is a cream that is been testes that i have n it is working pretty good but its beening tested so
lililuvsyuni16 1 year ago
@AllieandFriendz I don't know if you can or not. I have those spots, fibromas all over my back and stomach, and they are moveing towrds my neck. I also have a bowed tiba and a slightly curved spine...but its so small of a curve its not noticble.
silvweatest 1 year ago
everything i hear about nf is depressing. i have it also and despite the smartest docs giving me a prognosis about being dumb, blind and deaf, i became a pediatrician. THIS IS NOT A DEATH SENTENCE. we can beat this. look into the promising effects of light therapy to start and have your congressman support Dept of Defense funding of NF research. it is such a shame that after all these decades, there is still no cure, or treatment.
electromagnetician 1 year ago
@electromagnetician i agree to there has to be a cure but they dnt want to tell it too us
lililuvsyuni16 1 year ago
@lililuvsyuni16 There is a cure and it is up to us to find it. There are healing sound frequencies, like 526Hz that repairs DNA mutations. There are so many antioxidants in natural foods, especially soursop, kmown to be more effective than chemo. the spice curry also has anticancer properties.
We must find out why some progress more than others.
Don't let others' perception of you determine your perception of yourself. Watch The Secret and view yourself as you want to see you.
electromagnetician 1 year ago
Its not a disease, sorry but you would fail.
demers99 1 year ago
i have NF1 i have tumors all on me anyone wanna chat just private message me just say who you are first okay :-)
hayleypetamarrs 1 year ago
just had a tumor removed from the back of my skull for the second time, in august
ilovemusicWIKA 1 year ago
i have this mild tho
MONIQUEIJ 1 year ago
i have tumers on my nerivs and i had one be hind my ear that was removed but it might come back. NF is something you dont joke about it. soo if anyone is joking about pls dont. i have NF1 they found it when i was 4 months old.
ashyandwhit4ever 1 year ago
Hmm i found a growing lump of my face, i have NF , but i am worried what to do with the lump of mt face
Any help ?? please
skittleshit69 1 year ago
I have neurofibromatosis too i live a normal life
Monkeygal1000 1 year ago
I have nf too....i have just the spots though.
swtxwishes 1 year ago
@swtxwishes
i have it to. .
OMG i also have tose spots. .
sub to meeee. .
its been hard for mee
jessbritt121 1 year ago
i has this disese but its not a bad condision
foxmcloud23 1 year ago
the sprit is some thing no man can crush if you are strong enough always remember what people if its bad they have a asshole just like me if they are poliite and have a good hart kool i have a new friend
jrad196346nf1 2 years ago
we all die brittney its not how we die but how we live that matters.
thepezman5 2 years ago
yes people are very rude about it, I wore shorts to school a few times and got amde fun of for having brown spots on my legs got kicked and called dirty for not washing. Life is hard with it but I feel it has made me stong as a person.
thepezman5 2 years ago
@thepezman5
im sorry haw you feel. .
i have NF and i also get made fun of. .
sub to meeee
we have somthing in common
jessbritt121 1 year ago
I have NF1 and showed this to my friends so they could understand the condition better. Unfortunatly,many people don't understand this condition and are often rude about it.
HarryPotterTrio91 2 years ago
@HarryPotterTrio91
i know i get made fun of because of it. .
its been hard for meee. .
sub to me
jessbritt121 1 year ago
there is not god
piratillainformatico 2 years ago
yeaa and the brown spots and learninq disabilities but will i die
BritneyfanXx 2 years ago
i have nf! will i die im Very younq but i have type 1 and only get small bones around my body that move
BritneyfanXx 2 years ago
i also have nf. and thankfully mine arnt as bad as the ones in these pictures, but i do have one on my face. and i have another one on both my arms, i dont really have those brown spots but i do have a few. kinda sucks, but its what ever, i still live a normal life.
loka653 2 years ago
todos los que marcais mis comentario anterior como negativo lo primero que teneis es que sufrir esa enfermedad y despues pedirle a vuestro amigo imaginario que os la quite a ver si os escucha. Abrid los ojos
piratillainformatico 2 years ago
I have Nf1 and am 17. i have fibromas all over my back and stomach, one on each arm...and are devloping some on my neck. Iv been told that waht i have is gross. Iv been made fun of since i have a brace on my leg and limp. Im not allowed to do sports or even run. but despite all that, im happy. Iv learned to live with it. and iv learned not to notice the stares.
silvweatest 2 years ago
you are all fucking emos
fasanlort 2 years ago
i have nf, people just try to stay away from me I HATE IT my bigges wish is to just turn into someone else, i got one in my face but had it removed in 1st grade i also have one in my back arm and neck. i am still jubg (13) and hope there will be a cure.
Sapphiregriffin 2 years ago
I have NF1 and i dont hate it...Becouse living without it will make no diffrence i live a great and normal life.
AllanP2009 2 years ago
i hate having NF this girl was teasing me saying " you hog all the birth marks"
but i also have learning problems i hope i don't die young
:C
skittleshit69 2 years ago
God does not exist
piratillainformatico 2 years ago
IKR i mean how could he/she and which form doe it come in?
Sapphiregriffin 2 years ago
I don't understand you
piratillainformatico 2 years ago
*does-------------------ikr-i know right!
Sapphiregriffin 2 years ago
Comment removed
JPinson20 2 years ago
I have NF 1!!! I hate NF and I hate god fuck them both!!!
LOVETROLL69ME 2 years ago
@LOVETROLL69ME same but i dont think god igsists. ths doesnt mean you cant beleve in him this is only me oppinion.
Sapphiregriffin 2 years ago
God didn't give it to you. if anything pray to him.
sorry about that btw. i've got noticable problems myself. it sucks.
rkfan2323 2 years ago
I have NF1 too. I hate nf1 too, there is not god, but if there is god he suck my dick
piratillainformatico 2 years ago
I hear ya man! I said once I will say it again FUCK god and FUCK NF!!!!
LOVETROLL69ME 2 years ago
@LOVETROLL69ME
yeahhh. man im 15 and i hate having MF and its been hard for me because i cant stay away from the doctors office. . . yeah im not a beliver in god
because if there was one he would have cured us alraedy and i see nothing
jessbritt121 1 year ago
@jessbritt121 Don't ever give up. I use to hate the Creator, especially after believing what my own family members told me about being cursed by God. kept thinking why me. My NF is progressing and i still have to convince others that i don't have chicken pox. Now i thank the Creator for turning this tribulation into a blessing, because I am one of the most compassionate people I know. Those of us with NF must be the ones to cure it, but you need a source of hope, a light.
electromagnetician 1 year ago
@piratillainformatico
hahaha lol whyyy. .
im not a bible freak
jessbritt121 1 year ago
I have NF1
onlymassiss 2 years ago
me too...i am ashamed of it
altargirl9 2 years ago
i was also on the news.. because of my NF1 and my learning disability
hawker445 2 years ago
god i fucking hate NF1
hawker445 2 years ago
right now doctors are working on a pill that you can take every morning to help prevent tumors from developing
so hopefully within 8 yrs we will have it
carie5893 2 years ago
i just wanna say NF is not deadly if it is the most serious case out there with tumors in the chest then yes it can be deadly but most children will not die at a young age from it
carie5893 2 years ago
i am 27 and am marrying someone who has nf type 2, i am trying to convince him that having kids would be better than not having kids,what are youre oppinions?
loveless2198 2 years ago
HI loveless2198 i have nf1 and have 2 kids first child was ok but second child got nf also i suggest u before planing for children discuss it with a doctor
starbucks3 2 years ago
I seriously recomend getting an adoption or a sperm donation.. doctors recomended it to me when im older. but a guy with nf2..ehh thats not gona be pretty.. but idk.. your genes might be domonint. ... but if you don't want a kid with Nf i seriously don't recomend your husbands sperm,
hawker445 2 years ago
I have NF2 and I want kids, it could be worse
bigamushead 2 years ago
i have nf i am scared out of my mind
demonchildeXD 2 years ago
I was diagonosed at age 8 I have 5 children 3 have been diagnosed we have mild sympthoms but I know God is a healer.
PinkProphetic 2 years ago
i hav nf im 15 i noticed a big lump when i was 13 its a tuma i proply ive been told i might die before i turn 20
themcbirnie 2 years ago
I was diagnised with NF2 in my mid 20"s. I am now 43 a living a normal life. Don't give up and have faith.
aa4285 2 years ago
i Have nf although not physical apperance is affected apart from a few raised lumps on my face ive had internal problems, when i was 13 i had a kidnney transplant due to a shortining of the main vein leading to the kiddney, apart from that ive been fine but the older i get the more lumps are appearing
Jeremychefisgood 2 years ago
Thank you!!!! I am 27 now and i am a part of that 50% that will die at a young age, I have a NF tumor (not cancer) in a place they can nt cut into to remove... so has is grows, I am dieing..... Nf is no joke, you luck y few who have Nf and still are like the normal people.... Please just dont have your own kids... everyone has Nf different and your child could be like me or worse.....
I will be dead before i am 30-32...
RedUnicornLady 2 years ago
i have that dieases but i didnt know it was that bad but mines is minor
TheApocalipse13 2 years ago
sum one please tell me yes or no if there is ever going to be a cure for Nf if tehy do find a cure wat wud they cure some of it part of it or all of it
ls4ever999 2 years ago
my son (now 4) has NF1 he was diagnosed at 2 years old...he has the spots on his stomach...he also has Autism (im wondering if the autism is the learning disorder - one of the side affects)
stay strong people and try to live life to the fullest.
bigcol70 2 years ago
it is a deadly disease??????????
1. NF is not a disease is a desorderd who causes diseases
2 NF has no cure,but we can save our childrens with the enburion selection
3 i am 18 i am not dead. i had never had a suregy and my life expectance is a bit shorter than the normar (becouse i got mor risk to suffer a tumor) but it is around th 72 mol. so it is NOT a disaese and is NOT deadly
ikerbeast666 2 years ago
first of all get your fuckin facts str8 I have NF1 it is a DIESEASE! and you can't prove it not to do....it has killed people many times....I nearly died from it...just cause your lucky to be more normal than most people does not make it a non-diesease issue...it is and shall remain a diesease....hence why there is NO CURE!
ZombieMahem 2 years ago
Pepole dies of tumors, gliomas , cancers caused by NF, but NF itself is not deadly . only the 33% of people with NF has important toumors. NF is not disease is a genetic disorder (caused by an anormal protein on a single gen) who causes diseaseas. the soul is just an idea caused by the mind , that is just a complex sistem of chemical reactions in your brain.
ikerbeast666 2 years ago
hi i to have N.F type 1 i was always told it was a genetic disorder due to a faulty gene i have lots of problems from it more then i can count small lumps witch are sort of numb and 1 large peripheral nerve tumor, neurofibroma at the top of my arm and coffee colored birth marks all over and loads more hope we can chat ad love to find out how other people handle and there problems
ParallelWorlds1 2 years ago
hi! I have n.f 1 as well.
mamasuzie 2 years ago
NF2 can cause death..... and bouth NF1 and NF2 has no cure
enexti 2 years ago
They tell me that I'm fine BUT I WANT 2 SAY I'M PRETTY NOT THEM BUT ME. And its hard for them 2 understand that so IF U KNOW A GOOD EYE SURGEON THAT CAN HELP ME PLEASE SEND ME A MESSAGE OF THEIR WEBSITE thanks =]
justinsboo8990 2 years ago
y u want eye surgeon i have these hings on my optic nurve i want them gone
ls4ever999 2 years ago
I wish teachers can teach this in school so students can know about dis because I been through so much HELL with other students with my condition of my eye. I'm now an high school graduate and its still hard for me 2 feel good about myself. I hate the way I look and I hate taking pictures with my friends,family, and boyfriend.
justinsboo8990 2 years ago
I also have NF and I had it since i was a baby. I been through ALOT of surgeries I have the brownish colored spots, I had scoloisis, I have a tumor in my left eye, and I have an learning disablity. I had at least 3 surgries to try 2 get my left eye 2 look normal like the other but it always droop back as it was before. When I was 10 I got surgrey 2 get a metal rod 2 be put in my back for my scolosis.
justinsboo8990 2 years ago
I am also with N.F
Very difficult for me with this.
With stains have
Hfnimim crops.
Always sad to me that there is no solution
I wish I were more aware of it
There are no ads in such a
Great movies Biotiov Owner
Sichiro more help, support, Itrmo ..
engel8831 2 years ago
i live in the uk and also have nf1, constant pain and head aches, always tired and have sleep problems, im dislexic have a big tumor on my right arm that they wont operate on i get constant stares and comments made to me making it hard to go out. with all this i get no help from the government or benefits. is anyone else in the same possition and cant get the help they need, if anyone has a solution in getting support please contact me.
whooseyerdaddy 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 he pepole who was been agaist me, it was been me who was against i
ikerbeast666 2 years ago
Um HELLO YOU JACKASS! If you think i'm sitting around moping your out of your fucking mind! and saying your stronger than your illness and your not ill and yet you have the number of the beast in your name....you are very ill...Jesus is my reason for fighting on....Jesus is my lord and saviour...and God is the beggining and the end....you sir....are pathetic.....
ZombieMahem 2 years ago
if god exist he/she /it shou
ld be an equal. . but he/she/it dosent exist so i am the lord and owner of my body and my mind. who is the patheticc.?
ikerbeast666 2 years ago
first of all...take kindergarden english again....second of all....where did your SOUL come from then? And God is very real.....I only hope you see HIS light you fuckin moron!
ZombieMahem 2 years ago
Thank you for being pretty much on target for something you probably knew nothing about b4 hand. Our son was diagnosed at 2 but we knew something was up when he was born becuz he had so many spots. He has NF1.
TeamKoda 2 years ago
i hope they find a cure for neurofibromatosis
MONIQUEIJ 2 years ago 2
although this information is very gd its also slightly wrong im now 19 and have only just been told i have NF not when i was born
rob232187 3 years ago
Hi Rob, I have NF too...and like you, It wasn't discovered till i was 3, ...guess it's that they don't discover it until they have a reason to look for it.
NewYorkWerewolf 2 years ago
i only found i had it when i was 13 im 21 now and i am having a tumour removed soon
htid69 2 years ago
Wow....you sure did your research on NF....Im impressed....( I only say this cause I have NF Type 1). What about the spinal part of NF? You seem to have left that one out....but still I'd give you an A++ for your work! Just make sure people don't think its contagious ;)
ZombieMahem 3 years ago
Magyarországi NF-es Betegek Társasága, magyarul beszélő sorstársakat keres bárhonnan a világból!
nfhungary 3 years ago
i have nf 2
alanlogan111 3 years ago
I have NF1 and pseudoarthosis of the tibia. I lost my leg to it after many failed operations, braces, cast, pins, rods, fixaters, the bone never mends once it breaks as mine did in a cast at 8 months old. I had many painful operations 17 in all that only lead to a bone infection.
rustyboy12198 3 years ago
I know your pain (as far as NF goes) Im 15 and living with it too.
ZombieMahem 3 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 he pepole who was been agaist me, it was been me who was against i
ikerbeast666 2 years ago
i had one of the tumors in my brain removed in sep 08 they were so sure it was cancer it was so scary lucky for me it was not but it has left me half blind and because of that i was fired my manager did not want to work with disabled people and they were her exact words
khensu83 3 years ago
Hello!
I like the video because it served to warn people about this disease.
I am from Brazil, and my daughter has this disease but the disease affects the spine, causing the scoliosis.
rafaelebebela 3 years ago