Hi I have NF as well. along with chronic pain and plenty of visible tumors. Its difficult to live with this condition. Hopefully one day there will be a cure or at least something to stabalize this aweful disorder. Good luck with you who have NF also.
You are incredibly brave to share your story with the world. I personally feel that mass awareness is the first step in finding a cure for things like this. I wish you the best in your life.
Heyy there :) I too have NF1 and I was diagonosed with it when I was just an infant. I have luckily had no major complications due to my NF1 so far but I do have pretty bad freckling and many cals on my skin. Thanks for making this video. People need to get the word out about this disorder because so many suffer from it.
i was born with nf i am 24 now i have the tumors on my body and brain tumors and the cafele spots all over my body i cant afford any docs and i lost my ssi when i turned 18 they wont approve me for ssi now and i have had back spine pains my back isnt straight its really deprssing and immberissing i have bad memory and head pains i also have the bumps under my arms bad and in the armpit area i dont walk right either
I am a student researcher. I am studying the effects of Neurofibromatosis on social/ behavioral aspects on NF1 patients. I want to examine the behavioral/social effects on NF1 patients lives. and other similar questions. I will use the information I collect, and analyze it. I will look for connections, and how this relates back to NF1, and possible treatments. If anyone could help me i would be glad!
hi my name is jennifer and i have Neurofibromatosis type 1 and my mother and sister and 3 of my 4 childrenhave the Neurofibromatosis type 1 and 2 of my sister childern have it as well and are great grand father as well i have some bumps but it mostly looks like i have a rash on my body all the time but i would love to tell you moor but it would i would write a book
I have NF1 I am part of the support group here in Western Michigan, and I have the tumors on the outside including inside around my brain, spinal cord and Heart. I also have an S curve back.
I have NF1, I've known I have had it since I was little and I am 25 now. I am told it's not a bad case of it. I have cafe au lait spots and my dad has type 1&2 as does my uncle. I don't have any lumps as of yet and I have no clue being 25 if there is still a chance I will get them but I am sure there is a chance. I've never been in a relationship because I am scared that if I do get lumps on my skin in the future the guy will run. I've seen comments/stares my dad gets and it makes me sad for him
@morguebabe very informative video i never new this existed till i watched this these sort of videos show us just how lucky people who live without these problems are really lucky and we should be more happy with living a normal life in a normal body i wish you luck with this
I have a large cafe au lait spot with jagged edges and a few other little ones on my back. I also have what I can only describe as lumpy fat cells probably lipomas just beneath my skin (not visible to the naked eye without touching) on my arms, thighs and chest. Do you think I might have NF1?
I don't have any nodules in my eyes, and they both seem to be healthy according to my opthalmologist.
As of yet I haven't been to a doctor about the other symptoms described above.
From age 3 to just before I turned 5, I had trouble holding my BM's and needed changing daily and had problems with bladder control from 2nd grade to 7th. could this be part of my NF type 1? I also feel bad that you had this disease. I'm not sure if my NF type 1 is mild or severe. I know i have it: dry iitchy skin, Check; pain in lower back and upper shoulder, check; speech delayed (therapy started @ age 3 for my speech), check
I have NF1 too...My mother passed away from it..I used to feel scared and a little angery because no one really knows about it..(Well atleast were) I from so ever) time some1 ask me what was wrong with me I had to go into long explanation. Thank you so much for this vid not only are you educating some ppl about NF your making them feel less alone
I have NF ! with bumps over my body, and getting more on my arms. They found on my my brain as well. I wanna now how many of you are pissed at god I am
i have NF-1 as well i was diagnosed at birth and im 17 years old and never had a tumor i have cafe-au-lait spot almost everywhere on my body and neurofibromas on my torso my doctors told me if dont get tumors b4 i turn 18 i shouldnt worry about getting one
I just wanted to thank you for this. My boyfriend has NF-1 and I'm really trying to learn more about it. He has some visible nerve pockets and a couple of cafe-au-lait spots. He has Lisch nodules in his eyes and I believe he had a brain tumor too. I'm actually really fascinated by the disease and how broad it is. It needs to gain awareness
Hi, I amm 33years old, I was dx with NF-1 at 8 years old, head brain surgery at 10, and it gave me mild problems groing up ( teasing, poiting ect ) when I turned 29 it got bad I have massive tumors in my l-1,l-5 and have scroliosis as well. Your video is great, it sums it all up. Everytime I go to the ER NO ONE gets it. Not even the Drs the pain the agony... I have many of the same things as you, small body tumors hear and there, cafe at lait on my back and legs tumors inside everywere.
@The4321emma Feel free to talk to me about it! My husband and daughter have it and I know enough about ito carry on a conversation. :) Do you go on inspire.com too? It's a great site/.
I just learned of this disease because the Daughter of a friend of mine is going through a rough patch with it. I'm keeping both of your in my prayers & sending positive vibrations your way. Thanks for sharing your story, and I wish you the best.
I also have Nf 1 I just went to the Dr. today to check out a lump around my arm pit area luckly it was only a Neurophbroma ( sorry my spelling sucks) but this dose affect people diffrently, but I was always teased for it and isolated beacuse kids are mean. if any one really wants to please message me and if any one knows a group on Face Book I would greatly like to hear, it's lonly .. to lonly to say the least when you cant talk to one who understands but please I would love to talk.
i have NF1 i was bone with it, i have a bone missing in my left arm, and i have a back that cove just looks like ursr, i have a leg probmlem they turn in when i walk, i have learing probmles spech as will and lots more
@hayleypetamarrs My daughter and husband both have NF, and I love them so much. :) I think it's great that you make NF awareness videos - hardly anyone knows about it and word needs to get out! :)
like you I have nf, wasnt diagnosed ti 27, decided not to try for children as is a 50% chance of it being passed on to each child.I was a new mutation and its been hard to come to terms with as no one in my family or among my friends understands it.
like you I have nf, wasnt diagnosed ti 27, decided not to try for children as is a 50% chance of it being passedd on to each child.I was a new mutation and its been hard to come to terms with as no one in my family or among my friends understands it.
@bullbrooke Hey now you can't let NF get to you like that. First off the last time I checked the severity of your case has nothing to do with your children's. I don't know if the video said that or not I couldn't read it all. Secondly, if you want to have kids then have kids. I have NF and have the same thoughts all the time, but then I think what if my parents thought the same thing?
@bullbrooke I couldn't fit it all in one so here you go again! I was born as a spontaneous mutation, but if they knew I was going to have NF, I would want to be born again and again. Letting NF rule your life through fear is not good. No one knows what the future holds for us. My advice have kids and experience NF together if they have it. I couldn't tell you how much I wanted someone to relate to growing up, your kids will already have that.
@myrtlemaid, I can't say that I fully understand what you're going through because I don't have NF. My husband and first daughter do have NF1 though, and I married him knowing about his NF and loving him just as much as if he never had it. I think children are an amazing blessing, and I'm grateful that I was able to have a child with NF. She is such a beautiful girl, and I love her. She's got a strength to her that's like her Daddy's. He'll be there for her if she has any questions about NF.
@myrtlemaid, I think it would be a beautiful thing if you did have children. I know that for my husband, it was hard for him after my daughter was diagnosed with NF because he thought it was his fault, but I assured him over and over that I love him and our daughter so much, and nothing can change that love. I don't blame him for anything - in fact, I'm grateful to him for giving me such a beautiful family. I find that people who are most afflicted by health problems are often the most lovely.
@bullbrooke It's very likely you can pass it on. I am a 43 year old mother of two. My NF is a Spontaneous Mutation, neither one of my parents carries the gene. My older daughter has it and my younger daughter does not. When I was young, doctors knew very little about NF and told me, if I had children with a black man, my kids would likely not have it, being it was rare to none in blacks.......don't believe that.
@superrkoman, if you meet the right person (who loves you unconditionally), I think you should get married. Don't let NF dictate your relationships. :) I married a man with NF and I love him so much - there's no one else I'd rather be married to. He's the sweetest man in the world, and I am very lucky to be married to him. :)
@superrkoman, I am so glad to hear that. It breaks my heart to hear these stories of people with NF who have been affected so deeply by it that they want to put their lives on hold for fear that no one would love them. That's something I've thought about with my own daughter - how is she going to feel later down the line? But I have hope that she'll see how very loved she is, and how much I love her daddy, and that will remove all doubt and fear for her. True beauty so often springs from pain.
@bullbrooke I have NF1, My 1st daughter has it also, were waiting to see if my 2nd daughter has it also, the thing to remember is that children are a blessing, even if they do have NF1
@bullbrooke Hi! Now I know why I didn't remember commenting to you... it must have been my husband on my profile (sometimes we get confused and comment on different profiles, thinking we're on our own). But I am very glad to have met you and I think it's great that we're all coming together to raise awareness of NF. :)
i also have nf1 i have the birth marks as well as the dark circuls under my eyes.i know its not easy to live with this & i dont know anyone else with this.. I was told @a young age that i have it &did not under stand a lot bout it til this year & i have knew about it for 20 years but some of the doc just were not that smart to it & i have found a great doc n now gettin the things i need done to fully under stand. I am going for MRI'S on my back n eyes and head.hopin i dont need surgery
i have nf i have nodules on my optic nerve in my eye i have dark circles cus of it if the summert i can put over it to cover it up cus im getting pissed off people saying you have 2 black eyes
i have cafe au lait spots all over me. some massive, some you cant even notice. but how do i know if i have NF1. there are no bumps.. just lots of spots. can someone please answer this question????
@asignmentpdhpe, you'd probably want to see a doctor to verify if you have it. You could look up the symptoms of it online, but I think a doctor has to make the final diagnosis. :P
I have nf 1 as well. IF anyone here needs a support group go to inspire.com. type in neurofibromtosis and you will many people who understand what you are going through.
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 and click the link
if your buying or selling click through that link to access ebay every time you use it to raise money for neurofibromatosis. it doesnt cost you anything! support nf now.
Hi I also have NF1 and life has been a challenge I'm 35 and have had a few sugeries. I've had some removed and thankfully they havent returned. I've never met anyone who has it so I really dont have anyone to talk to about it
hi people, I suffer from nf1 and am going for surgery on the 9th of dec this year, am absolutely scared as its gonna be a big operation, its also gonna be filmed for channel 4's embarrassing bodies, people need to know more and understand nf. there is not enough awareness on nf.
hi i have nf1 and i have had a lots of doctors look at me has anyone else have the lishea noucles in they eyes i got to go for a ct sacn to see if i need surgey on them
@hansioned For a lot of people that have NF like myself we grew up in the 80's in an era where even the doctors referred to as NF as being a disease. Yes, it is a disorder, but by it's alternate name it's also considered a disease or syndrome depending on where you look it up. The def. for von Recklinghausens disease/syndrome will still lead you back to NF1.
Hello I have NF 1 for the pass 40 years. Been through to many operations to count. But love life. I have no kids because didn't want to pass it on to my kids. But if anyone wants to talk to me about NF and now to live with it everyone write to me
i also have NF1 that has caused scoliosis i also hve tumors on my optic nerve i know what u meen about people being mean in my town iam know as hunchback of notra dame my frist op to remove the tumors on my neck at the age of 2
my punky pie is 6 and was diagnosed last year.... we need to find a cure! Thanks you for doing this video.. thank you so very much... So sorry no one deserves this...... I am so scared for my daughter and she cries already about being "spotty".....
I have NF not sure which type. Have two bumps one on each arm and a third on my leg. I belive from when I was a kid I have the fibromas on the backs of my eyes.
My mom is coverd in the fibromas I have somewhere in the area of 26 birthmarks
I have NF not sure which type. Have two bumps one on each arm and a third on my leg. I belive from when I was a kid I have the fibromas on the backs of my eyes.
I have NF 1 too. . . I got it through genetic mutation. I was diagnosed with it when I was six weeks old. I agree with you, not any one case of NF is the same.
Oddly my NF causes bone tumors (not neurofibromas, but giant cell like lesions) apparently doctors are discovering that NF along with a couple other disorders seem to overlap in symptoms and presentations. The author of this video should look up diseases like Noonan Syndrome, LEOPARD syndrome, fibrous dysplasia, and costello syndrome. Google it with neurofibromatosis.
have nf-1 myself, but very very mild. just have, the cafe au late spots and a few small bumps. skeletal wise, only my arms and legs are effected, they are just a few inches longer then what they should be for my torso size.
have nf-1 myself, but very very mild. just have, the cafe au late spots and a few small bumps. skeletal wise, only my arms and legs are effected, they are just a few inches longer then what they should be for my torso size.
You are an inspiration, i tto have NF1. My mum died of NF, but she was one of the first recorded cases of NF Lumps growing in her winpipe and in herr tubes. RIP mum
NF fucking sucks i am only 23 years old and i can't even work any more because of the pain that i have in my back how am i suppose to live like this i am never gonna be able to work a real job. but thank you for posting this video it really did help me with some info
My girlfriend has NF type 1. She opened up to me about this not to long ago. I thought the"bumps" were just freckles and raised moles. When she told me about how this affected her since childhood, I melted inside. She is the most beautiful and strongest women in the world that I know. You are a very beautiful person too. Thank you for sharing this with the world. Keep up the good fight and educating the masses with your message!
@morguebabe Sorry didnt mean to cause anyone offence by this comment, I did not mean this to be rude or abusive, this is a genetic disorder that HAS affected me, and my family! I dont want to go into details online, but lets just say I am struggling with a personal battle right now x
@morguebabe Sometimes it can be semantics I know! I just know like to use the word "disease" as it grants too much power to NF. Sorry I know your probably get this a lot. Thank you for sharing your story.
ow course it does. It's just the matter of time before they find something. But on the moment they can do something about the symptoms. That's a relieve for a lot of patiënts even it's hard to life with it.
For all people with NF, be strong and hope for a cure :)
@hansioned Well tell us what the cure is then? My daughter is 6 and has it and all the dr.'s tell us there is no cure.. so please let the world know what the "cure" is...
@pixiegurly1 what i was saying is NF is NOT a desease, as deseases have cure's. Nf certaintly doesnt have a cure, plus its not contagious. so its not a desease. I did not say there was any cure to nf.
If it did i would give it to my dad, myself my siblings and my son, (hoping my bab y i am carrying now doesnt have it).
I did not mean to offend anyone, I have nf1 and upset that I have offended you/anyone else! Just dont like ppl thinking i have a desease- when i dont. sorry x
@hansioned ya see thats where your wrong, AIDS is a disease, no cure, ghonorea disease no cure, NF DISEASE NO FUCKING CURE! dumbass, NF is a disease, and a very hard one to deal with. how dare you. how FUCKING dare you!
@hansioned ok then, so you know the cure for aids? ghonorea? dude, its a disease. and a very hard one to deal with. so very kindly before you know everything about NF shut your face. cause its offensive to those suffering with it. good day.
@hansioned Disease is defined as "any deviation from or interruption of the normal structure or function of any body part, organ, or system that is manifested by a characteristic set of symptoms and signs and whose etiology, pathology, and prognosis may be known or unknown" so NF is a disease...
@hansioned Genetic disorders can also be totally avoided if carriers for the disease choose to adopt. If someone has a genetic disease then the only people they have to blame is their parents.
@JRD123456 you can't blame your parents. Because if your parents had chosen to adopt (or abort), you won't even be here. It's unfortunate that it happens, but I don't think its the parents' fault.
@farmerjack777 Wow, by this sound logic every women should be pregnant at all times because otherwise those babies will never be born...
Carriers of any genetic disorders are rolling the dice or flipping the coin when it comes to having kids (why I don't have any myself) and even if they luck out and their kids don't express the disease they will still be carriers and they'll be flipping the coin or rolling the dice for their kids and on and on it goes...
@JRD123456 With NF a person can get it due a mutation during the pregnancy, which means that neither parent has it. If either parent has NF then their children will have a 50% chance of being born w/NF, who in turn will also have a 50% chance of having children born with NF, but if their child isn't born w/NF their chances of having children someday w/NF is statisticaly the same as everyone elses. So to sum it up it is not true that all children born to a parent with NF will be a carrier.
@UFrenchfrfy That "mutation" is because one of the parents is a carrier, they have the marker but it didn't express itself. If a child's parents have the genetic marker for NF and their children don't express it, they STILL will be carrier of the marker so their chances are not the same as everyone else's. There is a difference between having the genetic marker and having the genetic marker express itself. NF is NOT a random mutation, thats why is has a designation of being NF....
@JRD123456 " NF is an autosomal dominant genetic condition; it is not contagious. Approximately 50% of those affected with Neurofibromatosis have a prior family history of NF. The other 50% of cases are the result of spontaneous genetic mutation. If an individual does not have NF, s/he can not pass it on to his/her children" I have NF and I am the only one in my family who has it.
@UFrenchfrfy not all individuals who inherit that mutation go on to develop the disease...People in your family have that mutation, but due to gene expression they didn't develop the disease...You don't have to develop NF to be a carrier for the possibility of mutation. If neither is NOT a carrier it's impossible for their children to be a carrier and it would be a new random mutation/disease and be called something else...Only an original genetic mutation is a result of random mutation.
@JRD123456 Well I am impressed that you know more then the National Neurofibromatosis Foundation and all the specialists that I have been to. You really need to educate yourself about this subject before you start giving your opinion about something you appear to know nothing about.
@JRD123456 Wrong again, apparantly you are just an ignorant 27 year old know it all, who in reality probably doesn't know his A** from a hole in the ground. So go an smoke your pot and have a nice life. PS I want to thank you for not reproducing
@JRD123456 Wrong again, apparantly you are just an ignorant 27 year old know it all, who in reality probably doesn't know his A** from a hole in the ground. So go an smoke your pot and have a nice life. PS I want to thank you for not reproducing.
@hansioned First of all, that is just semantics. Secondly, not all diseases can be cured. Ever heard of incurable disease? Disease is a large category that includes disorders, illnesses, medical conditions. Stop making people feel bad, especially the original poster of the video.
i have NF type one, i was born with, with it i got a bone missing in my left arm, i got learing and reading problems, i have problems with my legs they turn in when i walk, back problems, i have 9 surgerys on my arm and 1 one my leg and i got another on coming up for my left leg, i get headackes and at school i get pick on the way i walk
i also have nf1. and im getting ready to have surgery on my back to remove a tumor that has started to grow around my spine. i have already had one removed from my leg and that one has returned much worse that it was to begin with. after my back they want to remove the one in my leg. has anyone lost a limb from nf1?
My best friend has NF as well. Im glad you were able to get the courage to post this video!
starlight1228 1 day ago
i also have harrington rods
HelpMe311 3 days ago
i have nf as well
HelpMe311 3 days ago
i have it too
TheRoseAngelReturns 2 weeks ago
@TheRoseAngelReturns same but idk what type :O
ZebrasinPink15 5 days ago
Myself and my daughter have NF1 too x
mrsrsp 3 weeks ago
Hi I have NF as well. along with chronic pain and plenty of visible tumors. Its difficult to live with this condition. Hopefully one day there will be a cure or at least something to stabalize this aweful disorder. Good luck with you who have NF also.
reelbigfish1977 3 weeks ago
i have nf1 aswell
kittigereye 4 weeks ago
people with nf1 we will find a cure!
coolladdy101 1 month ago
i also have nf1
porcupine2060 1 month ago
I also got that genetic disorder.. But we can live well!!. Greetings from France.
LucksterMFerPeepNCo 1 month ago
Most of the affect more psychological
samueldavs 1 month ago
C'mon, is not that painful...we can live well !!! Greetings from Italy, by an NF1.
MetalBlare 1 month ago
You are incredibly brave to share your story with the world. I personally feel that mass awareness is the first step in finding a cure for things like this. I wish you the best in your life.
chrlshrdy 1 month ago
Heyy there :) I too have NF1 and I was diagonosed with it when I was just an infant. I have luckily had no major complications due to my NF1 so far but I do have pretty bad freckling and many cals on my skin. Thanks for making this video. People need to get the word out about this disorder because so many suffer from it.
girlafraid1982 1 month ago
I know this is totally irrelevant but I think cafe au lait spots are really pretty.
BarbedWireHalo 1 month ago
Sounds so painful, you are an amazing person. Keep up your cheerful spirit and good soul.
RachelnClink 2 months ago
do you have tumors?
MonaRocks09 2 months ago
@MonaRocks09 i think tumors are nf 2
haycm001 2 months ago
i was born with nf i am 24 now i have the tumors on my body and brain tumors and the cafele spots all over my body i cant afford any docs and i lost my ssi when i turned 18 they wont approve me for ssi now and i have had back spine pains my back isnt straight its really deprssing and immberissing i have bad memory and head pains i also have the bumps under my arms bad and in the armpit area i dont walk right either
MrHellrider6 3 months ago
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I am a student researcher. I am studying the effects of Neurofibromatosis on social/ behavioral aspects on NF1 patients. I want to examine the behavioral/social effects on NF1 patients lives. and other similar questions. I will use the information I collect, and analyze it. I will look for connections, and how this relates back to NF1, and possible treatments. If anyone could help me i would be glad!
Orochimaru990 3 months ago
hi my name is jennifer and i have Neurofibromatosis type 1 and my mother and sister and 3 of my 4 childrenhave the Neurofibromatosis type 1 and 2 of my sister childern have it as well and are great grand father as well i have some bumps but it mostly looks like i have a rash on my body all the time but i would love to tell you moor but it would i would write a book
tinycelticgirl 3 months ago in playlist Deadmau5
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I have NF1 I am part of the support group here in Western Michigan, and I have the tumors on the outside including inside around my brain, spinal cord and Heart. I also have an S curve back.
lbn1188 3 months ago
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lbn1188 3 months ago
I have NF1, I've known I have had it since I was little and I am 25 now. I am told it's not a bad case of it. I have cafe au lait spots and my dad has type 1&2 as does my uncle. I don't have any lumps as of yet and I have no clue being 25 if there is still a chance I will get them but I am sure there is a chance. I've never been in a relationship because I am scared that if I do get lumps on my skin in the future the guy will run. I've seen comments/stares my dad gets and it makes me sad for him
princess03130313 4 months ago
@morguebabe very informative video i never new this existed till i watched this these sort of videos show us just how lucky people who live without these problems are really lucky and we should be more happy with living a normal life in a normal body i wish you luck with this
pedroyaya1 4 months ago
hage in there girl i got nf as will if you want see what happen to me in 2009 look at my brain video pics of what happn to me in 09
YugiDragonStar 5 months ago
i got nf 1
sillyscott2 5 months ago
i have the same disorder
MrTLR92 5 months ago
Hi
I have a large cafe au lait spot with jagged edges and a few other little ones on my back. I also have what I can only describe as lumpy fat cells probably lipomas just beneath my skin (not visible to the naked eye without touching) on my arms, thighs and chest. Do you think I might have NF1?
I don't have any nodules in my eyes, and they both seem to be healthy according to my opthalmologist.
As of yet I haven't been to a doctor about the other symptoms described above.
AskariWaryaa 5 months ago
nf
AMERICA5833 5 months ago
From age 3 to just before I turned 5, I had trouble holding my BM's and needed changing daily and had problems with bladder control from 2nd grade to 7th. could this be part of my NF type 1? I also feel bad that you had this disease. I'm not sure if my NF type 1 is mild or severe. I know i have it: dry iitchy skin, Check; pain in lower back and upper shoulder, check; speech delayed (therapy started @ age 3 for my speech), check
MsBigmac99 5 months ago
I have NF1 too...My mother passed away from it..I used to feel scared and a little angery because no one really knows about it..(Well atleast were) I from so ever) time some1 ask me what was wrong with me I had to go into long explanation. Thank you so much for this vid not only are you educating some ppl about NF your making them feel less alone
thehappyusagi 5 months ago
I have NF ! with bumps over my body, and getting more on my arms. They found on my my brain as well. I wanna now how many of you are pissed at god I am
LOVETROLL69ME 6 months ago
@LOVETROLL69ME Its hard I know how you feel but Im not mad at God he does everything for a reason.
mamasmurf1o1 5 months ago
i have NF-1 as well i was diagnosed at birth and im 17 years old and never had a tumor i have cafe-au-lait spot almost everywhere on my body and neurofibromas on my torso my doctors told me if dont get tumors b4 i turn 18 i shouldnt worry about getting one
iceberg931 6 months ago
I just wanted to thank you for this. My boyfriend has NF-1 and I'm really trying to learn more about it. He has some visible nerve pockets and a couple of cafe-au-lait spots. He has Lisch nodules in his eyes and I believe he had a brain tumor too. I'm actually really fascinated by the disease and how broad it is. It needs to gain awareness
thisiswhackokay 7 months ago
@thisiswhackokay It's awesome that you're trying to learn more about it! Feel free to talk to me if you want! :D
BlessedBeyondCompare 7 months ago
Hi, I amm 33years old, I was dx with NF-1 at 8 years old, head brain surgery at 10, and it gave me mild problems groing up ( teasing, poiting ect ) when I turned 29 it got bad I have massive tumors in my l-1,l-5 and have scroliosis as well. Your video is great, it sums it all up. Everytime I go to the ER NO ONE gets it. Not even the Drs the pain the agony... I have many of the same things as you, small body tumors hear and there, cafe at lait on my back and legs tumors inside everywere.
MrUnclecb33 8 months ago
could one of get in touch please I to have NF and would like to chat please would love someone to chat to to
The4321emma 8 months ago
@The4321emma Feel free to talk to me about it! My husband and daughter have it and I know enough about ito carry on a conversation. :) Do you go on inspire.com too? It's a great site/.
BlessedBeyondCompare 7 months ago
I just learned of this disease because the Daughter of a friend of mine is going through a rough patch with it. I'm keeping both of your in my prayers & sending positive vibrations your way. Thanks for sharing your story, and I wish you the best.
teciasmom 8 months ago
I also have Nf 1 I just went to the Dr. today to check out a lump around my arm pit area luckly it was only a Neurophbroma ( sorry my spelling sucks) but this dose affect people diffrently, but I was always teased for it and isolated beacuse kids are mean. if any one really wants to please message me and if any one knows a group on Face Book I would greatly like to hear, it's lonly .. to lonly to say the least when you cant talk to one who understands but please I would love to talk.
neonshiki 8 months ago
hi i have NF 1 and i am 24 years old i had 2 ops good luck be happy
gamermoviesuk 9 months ago
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i have the same if u want u can add me at thinkerbell0016@yahoo.com ,
MyMommaof2 9 months ago
This has been flagged as spam show
i have the same if u want u can add me at thinkerbell0016@yahoo.com
MyMommaof2 9 months ago
hi my names is jennifer i also have it if u have facebook add me thinkerbell0016@yahoo.com
MyMommaof2 9 months ago
you must have so much confindence to do this , i really dont think i could , cause i have it tooo x
zoeebieberfanhannah 9 months ago
This has been flagged as spam show
Can videos from youtube be copied to a CD? If so how? John wa1lsh@yahoo.com
johnwa1lsh 9 months ago
Can videos from youtube be copied to a CD? If so how? John wa1lsh@yahoo.com
johnwa1lsh 9 months ago
i have NF1 i was bone with it, i have a bone missing in my left arm, and i have a back that cove just looks like ursr, i have a leg probmlem they turn in when i walk, i have learing probmles spech as will and lots more
EEliscia 9 months ago
do you wanna be in my nf video
hayleypetamarrs 9 months ago
@hayleypetamarrs My daughter and husband both have NF, and I love them so much. :) I think it's great that you make NF awareness videos - hardly anyone knows about it and word needs to get out! :)
BlessedBeyondCompare 9 months ago
i have NF and i make amwareness videos if anyone dose videos i would love to put you into my video please reply
hayleypetamarrs 9 months ago
im 16(female) nd i have Nf I going to be a doctor so i can Find a Cure !!!
Bored817 10 months ago 2
@Bored817 Thank you! Good luck I will be routing for you!
Joesphfffffff 9 months ago
im seeing a plastic suergon soon, to see about getting my birthmarks removed im so excited.
bullbrooke 10 months ago
This has been flagged as spam show
like you I have nf, wasnt diagnosed ti 27, decided not to try for children as is a 50% chance of it being passed on to each child.I was a new mutation and its been hard to come to terms with as no one in my family or among my friends understands it.
myrtlemaid 10 months ago
like you I have nf, wasnt diagnosed ti 27, decided not to try for children as is a 50% chance of it being passedd on to each child.I was a new mutation and its been hard to come to terms with as no one in my family or among my friends understands it.
myrtlemaid 10 months ago
@myrtlemaid i really want to have kids, but i don't wanna risk it as making my child have NF worse.
bullbrooke 10 months ago
@bullbrooke Hey now you can't let NF get to you like that. First off the last time I checked the severity of your case has nothing to do with your children's. I don't know if the video said that or not I couldn't read it all. Secondly, if you want to have kids then have kids. I have NF and have the same thoughts all the time, but then I think what if my parents thought the same thing?
Joesphfffffff 9 months ago
@bullbrooke I couldn't fit it all in one so here you go again! I was born as a spontaneous mutation, but if they knew I was going to have NF, I would want to be born again and again. Letting NF rule your life through fear is not good. No one knows what the future holds for us. My advice have kids and experience NF together if they have it. I couldn't tell you how much I wanted someone to relate to growing up, your kids will already have that.
Joesphfffffff 9 months ago
@myrtlemaid, I can't say that I fully understand what you're going through because I don't have NF. My husband and first daughter do have NF1 though, and I married him knowing about his NF and loving him just as much as if he never had it. I think children are an amazing blessing, and I'm grateful that I was able to have a child with NF. She is such a beautiful girl, and I love her. She's got a strength to her that's like her Daddy's. He'll be there for her if she has any questions about NF.
BlessedBeyondCompare 9 months ago
@myrtlemaid, I think it would be a beautiful thing if you did have children. I know that for my husband, it was hard for him after my daughter was diagnosed with NF because he thought it was his fault, but I assured him over and over that I love him and our daughter so much, and nothing can change that love. I don't blame him for anything - in fact, I'm grateful to him for giving me such a beautiful family. I find that people who are most afflicted by health problems are often the most lovely.
BlessedBeyondCompare 9 months ago
i have NF, does anyone know if we have kids will we pass it on to them??
bullbrooke 11 months ago
@bullbrooke It's autosomal dominate which means you about a 50% chance.
morguebabe 11 months ago
@morguebabe I HAVE NF1 a big spot in my back BTW MY BACK IS WORS THEN you I DID 5 scoliosis surgeryes
(may god cure us)
superrkoman 10 months ago
@bullbrooke It's very likely you can pass it on. I am a 43 year old mother of two. My NF is a Spontaneous Mutation, neither one of my parents carries the gene. My older daughter has it and my younger daughter does not. When I was young, doctors knew very little about NF and told me, if I had children with a black man, my kids would likely not have it, being it was rare to none in blacks.......don't believe that.
starrcash 11 months ago
@bullbrooke THATS WHY I WILL NOT GET MARIED
superrkoman 10 months ago
@superrkoman, if you meet the right person (who loves you unconditionally), I think you should get married. Don't let NF dictate your relationships. :) I married a man with NF and I love him so much - there's no one else I'd rather be married to. He's the sweetest man in the world, and I am very lucky to be married to him. :)
BlessedBeyondCompare 9 months ago
@BlessedBeyondCompare :) you made me feel better
superrkoman 8 months ago
@superrkoman, I am so glad to hear that. It breaks my heart to hear these stories of people with NF who have been affected so deeply by it that they want to put their lives on hold for fear that no one would love them. That's something I've thought about with my own daughter - how is she going to feel later down the line? But I have hope that she'll see how very loved she is, and how much I love her daddy, and that will remove all doubt and fear for her. True beauty so often springs from pain.
BlessedBeyondCompare 8 months ago
@bullbrooke your kid have 50 % of haveing it
i have it from my mum
gamermoviesuk 9 months ago
@bullbrooke I have NF1, My 1st daughter has it also, were waiting to see if my 2nd daughter has it also, the thing to remember is that children are a blessing, even if they do have NF1
BlessedBeyondCompare 9 months ago
@bullbrooke Hi! Now I know why I didn't remember commenting to you... it must have been my husband on my profile (sometimes we get confused and comment on different profiles, thinking we're on our own). But I am very glad to have met you and I think it's great that we're all coming together to raise awareness of NF. :)
BlessedBeyondCompare 9 months ago
@bullbrooke yeah u can pass it with a 50/50 chance. my little boy has it but my 2 girls dont
jazza1975 8 months ago
@bullbrooke i have NF as well
mizahz1985 5 months ago
@bullbrooke well you mite becese my mom got it my 2 sis did not get it but me i did so me and my mom got NF
YugiDragonStar 5 months ago
@bullbrooke i have nf1 as well, and there is a high chance our kids will get it as well
billyjohnson420 4 months ago
@billyjohnson420 NF1, it`s inherited most the time... I`m in the medical field, and we have one patient he has it.
westrnbo123 3 months ago
i too have nf1 100 of spots, a few bumps and tumour
Meshy07 11 months ago
@Meshy07 me 2
but i have a big spot covers my hole back
superrkoman 10 months ago
i also have nf1 i have the birth marks as well as the dark circuls under my eyes.i know its not easy to live with this & i dont know anyone else with this.. I was told @a young age that i have it &did not under stand a lot bout it til this year & i have knew about it for 20 years but some of the doc just were not that smart to it & i have found a great doc n now gettin the things i need done to fully under stand. I am going for MRI'S on my back n eyes and head.hopin i dont need surgery
someone2love4me 11 months ago
oh and i have atrophy brain shrink)
can anything else happen? hello im only 48
purselady2 1 year ago
i also have rods in my back (1976) from Scoliosess
purselady2 1 year ago
i also have NF1 and i have thinning of the opdic nerve right eye) ( is it serious?
purselady2 1 year ago
I have NF1, lost my left eye to a tumor. I've got tumors all over me now.
labcoat31 1 year ago
i have nf i have nodules on my optic nerve in my eye i have dark circles cus of it if the summert i can put over it to cover it up cus im getting pissed off people saying you have 2 black eyes
ls4ever999 1 year ago
i have cafe au lait spots all over me. some massive, some you cant even notice. but how do i know if i have NF1. there are no bumps.. just lots of spots. can someone please answer this question????
asignmentpdhpe 1 year ago
@asignmentpdhpe, you'd probably want to see a doctor to verify if you have it. You could look up the symptoms of it online, but I think a doctor has to make the final diagnosis. :P
BlessedBeyondCompare 9 months ago
i have nf and am looking for ppl in likewise situations to chat to about same
videolover2308 1 year ago
i have this too :)
MrCardiffBoy15 1 year ago
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purselady2 1 year ago
i have nf as well ,i had to have titanium rods put into my back to strignen my spine which was serverly curved
xxxsensormexxx 1 year ago
I have nf 1 as well. IF anyone here needs a support group go to inspire.com. type in neurofibromtosis and you will many people who understand what you are going through.
mamasuzie 1 year ago
I'm training to be a doctor in the UK and I found your video very touching as well as being educational, thank you.
BrianButtterfield 1 year ago 2
This has been flagged as spam show
i have nf1
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 and click the link
if your buying or selling click through that link to access ebay every time you use it to raise money for neurofibromatosis. it doesnt cost you anything! support nf now.
whooseyerdaddy 1 year ago
wow thats nothing i have i big spot on my back
superrkoman 1 year ago
Hi I also have NF1 and life has been a challenge I'm 35 and have had a few sugeries. I've had some removed and thankfully they havent returned. I've never met anyone who has it so I really dont have anyone to talk to about it
JNSCRUTCHENJR 1 year ago
@JNSCRUTCHENJR, my husband and oldest daughter have NF... you can talk to me about it if you want. :)
BlessedBeyondCompare 9 months ago
my mom and i have nf1
poopfacegiggles 1 year ago
its s emotional when i saw this video......but u did a gr8 job by explaining wat happened to u to teach others for eg even myself may god bless u
mithvik 1 year ago
i have nf type 1 am 16 and somthing i that nobody understands mee but am here to talk about it plz write back i really wanna talk about this
alybaby55 1 year ago
@alybaby55 I have nf 1 as well. would love to talk.
mamasuzie 1 year ago
@alybaby55, I'll talk to you about NF. :)
BlessedBeyondCompare 9 months ago
hi people, I suffer from nf1 and am going for surgery on the 9th of dec this year, am absolutely scared as its gonna be a big operation, its also gonna be filmed for channel 4's embarrassing bodies, people need to know more and understand nf. there is not enough awareness on nf.
Oisinmagic 1 year ago
@Oisinmagic do you when channel 4's embarrassing bodies is going to show your operation?
madcat61 1 year ago
hi i have nf1 and i have had a lots of doctors look at me has anyone else have the lishea noucles in they eyes i got to go for a ct sacn to see if i need surgey on them
kie9091 1 year ago
@hansioned For a lot of people that have NF like myself we grew up in the 80's in an era where even the doctors referred to as NF as being a disease. Yes, it is a disorder, but by it's alternate name it's also considered a disease or syndrome depending on where you look it up. The def. for von Recklinghausens disease/syndrome will still lead you back to NF1.
jetsfan4life 1 year ago
Hello I have NF 1 for the pass 40 years. Been through to many operations to count. But love life. I have no kids because didn't want to pass it on to my kids. But if anyone wants to talk to me about NF and now to live with it everyone write to me
jshehs81@yahoo.com
mrshy1969 1 year ago
i have nf1 asell my mum died of it and i would appershate it if u watched my nf1 vid im am doing 10,000 mile bike ride :)
kirstyrand1 1 year ago
i also have NF1 that has caused scoliosis i also hve tumors on my optic nerve i know what u meen about people being mean in my town iam know as hunchback of notra dame my frist op to remove the tumors on my neck at the age of 2
daydreamer4897 1 year ago
i have nf type 1 and i have had countless surgeries
FanFiction2010 1 year ago
my punky pie is 6 and was diagnosed last year.... we need to find a cure! Thanks you for doing this video.. thank you so very much... So sorry no one deserves this...... I am so scared for my daughter and she cries already about being "spotty".....
pixiegurly1 1 year ago
I have NF not sure which type. Have two bumps one on each arm and a third on my leg. I belive from when I was a kid I have the fibromas on the backs of my eyes.
My mom is coverd in the fibromas I have somewhere in the area of 26 birthmarks
0conundrum0 1 year ago
I have NF not sure which type. Have two bumps one on each arm and a third on my leg. I belive from when I was a kid I have the fibromas on the backs of my eyes.
My mom is coverd in the fibromas
0conundrum0 1 year ago
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brenda1219621 1 year ago
Hey, your awesome.. thanks for being so brave so others could understand more :)
beckachecka01 1 year ago
I have it too girl. .. it is super confusing
samsam019 1 year ago
I have NF 1 too. . . I got it through genetic mutation. I was diagnosed with it when I was six weeks old. I agree with you, not any one case of NF is the same.
Harmonyrocks1990 1 year ago
hey does anybody know if it is normal for the tumors to be rock hard?
satanlovespie666 1 year ago
Oddly my NF causes bone tumors (not neurofibromas, but giant cell like lesions) apparently doctors are discovering that NF along with a couple other disorders seem to overlap in symptoms and presentations. The author of this video should look up diseases like Noonan Syndrome, LEOPARD syndrome, fibrous dysplasia, and costello syndrome. Google it with neurofibromatosis.
LukeL007 1 year ago
have nf-1 myself, but very very mild. just have, the cafe au late spots and a few small bumps. skeletal wise, only my arms and legs are effected, they are just a few inches longer then what they should be for my torso size.
Knugz 1 year ago
have nf-1 myself, but very very mild. just have, the cafe au late spots and a few small bumps. skeletal wise, only my arms and legs are effected, they are just a few inches longer then what they should be for my torso size.
Knugz 1 year ago
You are an inspiration, i tto have NF1. My mum died of NF, but she was one of the first recorded cases of NF Lumps growing in her winpipe and in herr tubes. RIP mum
BeHonestYouShatIt 1 year ago
Nice personal vid, I don't have NF, buy my son does, so I also want a something to be done to better his quality of life.
Ysabella1301 1 year ago
NF fucking sucks i am only 23 years old and i can't even work any more because of the pain that i have in my back how am i suppose to live like this i am never gonna be able to work a real job. but thank you for posting this video it really did help me with some info
satanlovespie666 1 year ago
You are actully very straight im 8 an ive already had my operation
xxscoliosisgirlxx 1 year ago
My girlfriend has NF type 1. She opened up to me about this not to long ago. I thought the"bumps" were just freckles and raised moles. When she told me about how this affected her since childhood, I melted inside. She is the most beautiful and strongest women in the world that I know. You are a very beautiful person too. Thank you for sharing this with the world. Keep up the good fight and educating the masses with your message!
rkala30 1 year ago
thank u for sharing. God bless and help u all to ease your pain ;)
princesagb4 1 year ago
i have NF.1 and have a tumor on my left arm and gettin surgery on it
FunnyDeathGr8shooter 1 year ago
NF is NOT a disease! it is a genetic disorder- diseases can be cured!
hansioned 1 year ago
@hansioned Sorry if I used to word disease. I didn't mean to offend I use disease/disorder interchangeably.
morguebabe 1 year ago
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hansioned 1 year ago
Comment removed
hansioned 1 year ago
@morguebabe Sorry didnt mean to cause anyone offence by this comment, I did not mean this to be rude or abusive, this is a genetic disorder that HAS affected me, and my family! I dont want to go into details online, but lets just say I am struggling with a personal battle right now x
hansioned 10 months ago
@morguebabe Sometimes it can be semantics I know! I just know like to use the word "disease" as it grants too much power to NF. Sorry I know your probably get this a lot. Thank you for sharing your story.
Joesphfffffff 9 months ago
@hansioned : NF will be cured!!!!
aronbuchanan 1 year ago
@aronbuchanan how? by gentically modifying a fetus? test tube babies etc. Pills wont make it go away, its affects the cromosomes..
hansioned 1 year ago
@aronbuchanan
ow course it does. It's just the matter of time before they find something. But on the moment they can do something about the symptoms. That's a relieve for a lot of patiënts even it's hard to life with it.
For all people with NF, be strong and hope for a cure :)
D4vynci 1 year ago
@aronbuchanan wish i knew the answer how... think they can do it now via test tube.... but i could of dreamt that x
hansioned 10 months ago
@hansioned also a disease is contagious NF is not. I have NF2
ry2k09 1 year ago
@hansioned Well tell us what the cure is then? My daughter is 6 and has it and all the dr.'s tell us there is no cure.. so please let the world know what the "cure" is...
pixiegurly1 1 year ago
@pixiegurly1 what i was saying is NF is NOT a desease, as deseases have cure's. Nf certaintly doesnt have a cure, plus its not contagious. so its not a desease. I did not say there was any cure to nf.
If it did i would give it to my dad, myself my siblings and my son, (hoping my bab y i am carrying now doesnt have it).
I did not mean to offend anyone, I have nf1 and upset that I have offended you/anyone else! Just dont like ppl thinking i have a desease- when i dont. sorry x
hansioned 1 year ago
@hansioned ya see thats where your wrong, AIDS is a disease, no cure, ghonorea disease no cure, NF DISEASE NO FUCKING CURE! dumbass, NF is a disease, and a very hard one to deal with. how dare you. how FUCKING dare you!
phsycicchild24 1 year ago
@hansioned ok then, so you know the cure for aids? ghonorea? dude, its a disease. and a very hard one to deal with. so very kindly before you know everything about NF shut your face. cause its offensive to those suffering with it. good day.
phsycicchild24 1 year ago
@hansioned hmm it is a disease and a genetic disorder.... im 13 and no exactly what it is
its a disease because it can go through out the body
its a disorder because , it has to deal with missing chromsomes and stuff
green2bluedoll 1 year ago
@hansioned Disease is defined as "any deviation from or interruption of the normal structure or function of any body part, organ, or system that is manifested by a characteristic set of symptoms and signs and whose etiology, pathology, and prognosis may be known or unknown" so NF is a disease...
PROTON838 1 year ago
@hansioned Genetic disorders can also be totally avoided if carriers for the disease choose to adopt. If someone has a genetic disease then the only people they have to blame is their parents.
JRD123456 1 year ago
@JRD123456 you can't blame your parents. Because if your parents had chosen to adopt (or abort), you won't even be here. It's unfortunate that it happens, but I don't think its the parents' fault.
farmerjack777 1 year ago
@farmerjack777 Wow, by this sound logic every women should be pregnant at all times because otherwise those babies will never be born...
Carriers of any genetic disorders are rolling the dice or flipping the coin when it comes to having kids (why I don't have any myself) and even if they luck out and their kids don't express the disease they will still be carriers and they'll be flipping the coin or rolling the dice for their kids and on and on it goes...
JRD123456 1 year ago
@JRD123456 With NF a person can get it due a mutation during the pregnancy, which means that neither parent has it. If either parent has NF then their children will have a 50% chance of being born w/NF, who in turn will also have a 50% chance of having children born with NF, but if their child isn't born w/NF their chances of having children someday w/NF is statisticaly the same as everyone elses. So to sum it up it is not true that all children born to a parent with NF will be a carrier.
UFrenchfrfy 11 months ago
@UFrenchfrfy That "mutation" is because one of the parents is a carrier, they have the marker but it didn't express itself. If a child's parents have the genetic marker for NF and their children don't express it, they STILL will be carrier of the marker so their chances are not the same as everyone else's. There is a difference between having the genetic marker and having the genetic marker express itself. NF is NOT a random mutation, thats why is has a designation of being NF....
JRD123456 11 months ago
@JRD123456 " NF is an autosomal dominant genetic condition; it is not contagious. Approximately 50% of those affected with Neurofibromatosis have a prior family history of NF. The other 50% of cases are the result of spontaneous genetic mutation. If an individual does not have NF, s/he can not pass it on to his/her children" I have NF and I am the only one in my family who has it.
UFrenchfrfy 11 months ago
@UFrenchfrfy not all individuals who inherit that mutation go on to develop the disease...People in your family have that mutation, but due to gene expression they didn't develop the disease...You don't have to develop NF to be a carrier for the possibility of mutation. If neither is NOT a carrier it's impossible for their children to be a carrier and it would be a new random mutation/disease and be called something else...Only an original genetic mutation is a result of random mutation.
JRD123456 11 months ago
@JRD123456 Well I am impressed that you know more then the National Neurofibromatosis Foundation and all the specialists that I have been to. You really need to educate yourself about this subject before you start giving your opinion about something you appear to know nothing about.
UFrenchfrfy 11 months ago
@UFrenchfrfy Learn to hereditary disorder. Neurofibromatosis-1 is an inherited disorder, there is nothing random about it.
JRD123456 11 months ago
@JRD123456 Wrong again, apparantly you are just an ignorant 27 year old know it all, who in reality probably doesn't know his A** from a hole in the ground. So go an smoke your pot and have a nice life. PS I want to thank you for not reproducing
UFrenchfrfy 11 months ago
@JRD123456 Wrong again, apparantly you are just an ignorant 27 year old know it all, who in reality probably doesn't know his A** from a hole in the ground. So go an smoke your pot and have a nice life. PS I want to thank you for not reproducing.
UFrenchfrfy 11 months ago
@UFrenchfrfy wow, you really got me there. Your counter point is without flaw, haha I don't even smoke. U got mad...haha.
JRD123456 11 months ago
@JRD123456 you can get it from your family just like me i got it from my great great great grand father
superrkoman 10 months ago
@hansioned sad it is i have it NF1
superrkoman 10 months ago
@hansioned First of all, that is just semantics. Secondly, not all diseases can be cured. Ever heard of incurable disease? Disease is a large category that includes disorders, illnesses, medical conditions. Stop making people feel bad, especially the original poster of the video.
robertmichaelbob 10 months ago
i have NF type one, i was born with, with it i got a bone missing in my left arm, i got learing and reading problems, i have problems with my legs they turn in when i walk, back problems, i have 9 surgerys on my arm and 1 one my leg and i got another on coming up for my left leg, i get headackes and at school i get pick on the way i walk
EEliscia 1 year ago
i have nf 1
moodugno14 1 year ago
hi me and two of my kids have nf1
9joda 1 year ago
love the video.
wat is the song in the last part of ur video the one thats plays when ur facts are showing?
sweetlynumb86 1 year ago
@sweetlynumb86 Sia Breathe Me, I have all the songs listed on the side in order if thats the one you are asking for.
morguebabe 1 year ago
i also have nf1. and im getting ready to have surgery on my back to remove a tumor that has started to grow around my spine. i have already had one removed from my leg and that one has returned much worse that it was to begin with. after my back they want to remove the one in my leg. has anyone lost a limb from nf1?
inroute1017 1 year ago