Neurofibromatosis - MBNF - PSA 

Hi. I am 27 and I have NF. And it sucks. To everyone out there with NF, you are not alone. Stay strong.

I have Neurofibromatosis. I have had the Cafe Au Lait spots since I was born and have the Lisch Nodules as well. I also had the learning disability that came with it. I fortunately grew out of that. I go every other year to have an MRI of my optic nerves and my head, because I was told when I was very young that the Lisch Nodules COULD grow and become dangerous. So far so good. My sight however is getting worse each year. I am currently 27 and turning 28 years old this year. I am so glad there is more awareness of this, because its not easy at times to live with. Thank you for sharing!

I have NF too. As I'm growing up, I experienced bullying, discrimination and such. But that didn't stop me from chasing my dreams. It motivated me more. I learned to accepted it. My family and friends loved me for who I am. :)

I have NF1. Because of the disorder, I suffered from cancer. My family was shocked and we couldn't believe that I was sick. Having cancer from NF1 happens rarely, but I just happened to one of the people that had cancer. I am four years cancer free and I cannot be anymore happier, but the worry and anxiety from other tumors are a daily activity. I'm scared daily because of my body and what it could do to me because of my disorder but knowing that there are others out there that just like me gives me hope and keeps pushing me forward. Much love.

great love to all of us with neurofibromatosis from Denmark who also have nf1

What’s up y’all. I’m Rob, 30 and got diagnosed with NF1 mild case in outer appearance. But biggest impact was in learning difficulty’s in school. Was in a special ed pre school through high school. as well as vision. I graduated high school 11 years ago. I’m writing a book. Anyone who struggles with NF. Find something you love to do and do. If you love what you do, do your absolute best, and enjoy it. NF won’t hold you down.

I'm late to the post here. I too have NF and I'm 62 . To all these beautiful kids be strong and stay positive. God Bless You.

Thank you for the views and comments. We all agree that Neurofibromatosis needs to come out of the shadows and be brought into the light of the many disorders.Why NF has been pushed aside is a mystery. Possibly because it is an unpredictable disorder that seems hard to sum up in a short summary or video with its many variations. My son Seth is my inspiration, but since starting a Support Group and attending NF events across North America I've been inspired by so many individuals and families. Strength shows up in adversity and pushes us all to work harder to make a better life for our friends and family with NF!

I am now a 13 year old girl who fights NF1 and I'm staying strong! God Bless you all!

NF made me be blind in my left eye, I am still glad that's all I have..

I have NF2 and I’m honestly shocked that so many other people have it... I’m glad I’m not alone.

My name is Davor and I have NF1. I am 33, was diagnosed when I was 5. I just want to say hello to all my hero friends :)

I’m talking to a woman with NF1 and while we share photos, it seems like she doesn’t want to meet until we have some bond over the phone. She’s in her 30’s. I like her and wish she wouldn’t hide.

Mí consejo es que vivan una vida normal, no se tengan pena, ni limitados estudien una carrera un oficio y a laborar, nada impide que se realicen como personas y no tomen ningún medicamento. Procuren hacerse cirujía común buen cirujano dermatólogo y aceptence de corazón, amense y para adelante. El amor lo puede todo y la actitud positiva también.

This is so sad….I have NF1 but it’s very mild and I don’t suffer many major symptoms😢 my heart goes out to you all going though hash and life threatening symptoms💗

My name is WELLIgTON I'm 37 years old I'm Brazilian and I live in Brazil, I'm also a carrier of neurofibromatosis, I've suffered a lot of prejudice.

I’m 16 and i suffer from NF. NF caused tumors to grow on my leg making it hard for me to walk (i used to walk but not in a normal way) and it made my right leg much bigger than my left one. I used to get bullied because of that, still do. It also caused me to have learning disabilities, whih also made me a target for all the bullies but now i worked alot on my self, so my learning disabilities are starting to fade away making me in the top 5 rankings of my class and now i’ working hard to be able to walk normally again. I used to say to myself “why does fod hate me. Why do i have to suffer from NF and not others” i used to get depressed because of that and i even thought of doing suicide once, but now this disease doesnt affect me emotionally anymore, it made me a much stronger person. I am proud to say that i have NF and i wont stop fighting until we find a cure

I was diagnosed with NF 1 at the age of 2 months. None of my family had it so I was the unlucky one. And at age 8 I got a small Tumor by my right optic nerve and it was the scariest day of my life. If you have tumors and don't want to do chemo therapy do IVC treatment. I love and highly recommend it. For all who suffer NF God Bless You.

I have NF1 too. My mom and sister also had it. My sister passed away in 2006 and my mom in 2009. Both were due to cancer from tumors.

You are an inspiration Victoria, thanks for sharing such a positive attitude living with this complex disorder. Wishing you blessings and health.

Thank you for putting neurofibromatosis out there, I was diagnosed with NF-1 when I was born and was diagnosed with scoliosis when i was about 8 or 9 because of NF. I have had 2 surgeries now for my scoliosis, one in grade 4 and one in the summer in between grade 6 and 7. I am in grade 8 now and may need another surgery in the future. I hope people keep on raising awareness for NF because the more awareness it has the more people can help.

I have NF1 also I appear to have it fairly mild right now but it is terrifying that we have a shorter life expectancy it makes me so sad I HATE NF1

I'm 27 and I have NF. It was a struggle all through school. But all the negativity help push me to show everyone were no different then anyone else

Hi my name is Andrea and I’m 19 years old I have been living with nf1 as well as my big brother and little sister. It was hard in school. Recently my sister passed away this year from a seizure.

I have nf1 too you guys are awesome for creating a video to show awareness

I have NF1 and I have had it all my life and I am so glad I don't have tumours or the other stuff

The unknowing the risk then we'll never to give up in fight everyday to survive till the next I'm 34 two-and-a-half years old I was diagnosed

People don't understand that it had 50% chances of passing to future generation.. It can be controlled by Genetic testing.. I am affected with it but my fiance broke up with me when I told him about it.. I told him about all the possible options we can take to control in our future child. But he was not willing to take risk.. It cause a great heart break for me else all was well with us. Why I am getting rejection when it is not at all my fault. Am I not able to have kids or loving partner..

Hi Tracey. My daughter also has NF1 and 2 and just recently diagnosed with Scoliosis. The first 10 years of her life were quite normal until about a year ago when the pain started to get to her and Drs kept putting it down to growing pains but i knew it wasnt that. Its been a struggle coping and i say that from a parents point of view as Drew has been a normal girl with a carefree life and takes life day by day. I think it affects me more emotionally and at times i find myself cowering in the corner crying my heart out BUT Drew keeps ME strong. We posted a video as well to help raise awareness and hopefully find a cure. Much love, Robert xox

I have NF1 too, it's ok, just part of me now. I have to face many curious questions & remarks from strangers, but it's still alright as long as my family is with me.

Hi everyone, I too have nf and its really difficult to live with but life is what it is and I try to be as positive as possible..watching this video gave me some inspiration because I know that I'm not alone. It amazes how people will look down on you because of how you look, how they stare at you with a scorn without even knowing the severity of your situation. Times gone by I didn't even want to leave my house because I was sick of people starring me down,then I got some backbone and I even went to college and met some good friends who understood me. I still struggle but what can I do but try to live the best life possible. God has granted me the opportunity so I might as well live up.

I have NF and ADHD my school life is hard but I always wear long cloths to hide the tumors. Most are small and hidden, but still there. Every now and then I get what I call tumor pains. I have had three surgery's and one was to fix a chiari malfunction. Both disorders cause learning disabilities, so it is vary hard to pass high school. I have never meet another person with NF, so it is hard because there is no one to relate to. Thank you for this video it made me so happy when I was watching it.

I have NF and i almost failed school because it’s harder for me to learn

I have NF1. I was diagnosed at a very young age. I have many café aut le spots, a tumor about two inches away from my belly button, and I'm starting to get the neurofibromas on my arms and my legs. I have chronic migraines that can cause a seizure if I don't take something right away. I've have had three seizures in my life. At work, I have to avoid the freezer if I can. The cold causes horrible pain. One day I had to go in it and when I came out, I was in excruciating pain. I have bad pain in my knees. My dad and his mom have NF1

I was diagnosed with NF2 at age 3. I've had 8 surgeries and 3 radiation treatments. I can barely keep my balance and am losing my hearing... I will soon be starting chemotherapy. Living with NF is NOT easy, but we are strong! We can get through this we just have to keep looking forward.

Okay I have NF1 and I’m really happy with my life because I choose not to think about the what if’s and just live my life

Hi all. I'm sooooo glad that this has been getting recognition.also that others are sharing their stories. I pray that they'll isolate the gene that causes these tumors and block it from spreading, even prevent it from mutating.

This video is awesome to me. I myself have this disease and it’s great to see many other people with this same disease. I definitely don’t have it that bad. But it’s great to see others younger older or even the same age as me with this. I hope one day that I can meet and see and talk to other kids like me who have NF.

I am from northern ireland and have nf1 out of 2 brothers and 4 sisters I am the only one with this thankfully my 3 children are all clear they are all in their 20s and have had regular check ups

I'm 29 and have nf1 i had radiation when I was little to shrink a tumor on my optic never on the right eye I feel all of you had no friends was always teased was hard for me to learn things wish I could meet someone like me who understands what I'm going through

My mom says I'm lucky bc I have nf but I have no tumors

I was diagnosed with NF when I was 7. Since then I have experienced scoliosis, but no tumors so far. I've just had tissue growth these past 11 years..

Didn't know much about nf1 am almost 30 and have only been diagnosed with nf1 growing up I had a lot of what I and my parents thought where just birthmarks it wasnt until recently my wife noticed a large lump below my arm that I went to the doctor and he told me that I had nf1 I've had so many doctor appointments and have no idea what the future holds I can only hope that I am not a genitic carrier and that my son didn't get nf1 thank you so much for this video it has giving me some insight on nf1

Hi, i'm Bryant. I'm 46 yrs old and i have NF2. My dad has this, my grandmother(God rest her soul) My brother is a carrier of this but shows no sign of it. His kids , my niece and nephew show no signs of it but are carriers of it. My daughter that is 12 now shows no signs of it so far which is the age i was when i noticed that i had what my dad and grandmother had. At that time doctors weren't familiar with it . Thanks for sharing this and letting others know they're not alone.

I have NF1 i just recently found a bump on my head, i didnt actually start loking things up until i found it

Im 14 i was born with nf 1 im self counsious to wear anything cuz i have spots everywhere and fibromas growing im just scared for the future i dont wanna grow up fearing what will happen to me

I have nf1 and I also have learning disabilities, cafe latte spots, sensory with my scalp and ears, and my spinal cord sticks out of my back

I have NF2,I have been thru the ringer as far as surgury is concerned...my prayers are with us all

hello my name is allen and i have nf too, tumors came out of my body after my surgery in my left neck bcoz of lymnods.. 1 out of 3000 is very really rare but let us not look on it, i believe God has a plan for us, let us always pray. we are all healed in Jesus name

I have NF2. I lost my left eye and I'm hard of hearing + tinnitus. I won't let this take over me

it is sad that this video has 2,435 views, this shows you how much people care.

Buenas tardes y para Neurofibromatosis no podrían hacer una vacuna o quemar con láser el tumor que ataca los nervios es solo opinión saludos.

"Our greatest victory in battle is not of the one who's stood the longest without baring the scar but the one who fought to stand beside him baring the scar " Keep fighting guys x

I also have this disorder. I was diagnosed at birth. I have had 2 surgerys so far to remove large toumers one from the side of my head & the other that was the size of a golf ball from my ear. Having NF sucks

I have NF too. I am fortunate that all my my tumors have been small fatty tummors had one on my leg back and forarm that i had removed. I have had one grow on my left Bicep recently in the last 2-3 years and we are monitoring it looking at the posiblity to remove it. Unfortunelty its wrapped up in nerves so many surgeons dont want to remove it because i could lose the movement of feeling in my arm.. It doesnt cause me pain unless its pushed on or i hit it agiasnt something by accident. Ive had NF since i was a little kid. Im 21 now i dont let it rule my life. As a kid i would be asked about it and teased for the ones on my arm(Before i got them removed) and i would just say that they are just bumps that ive had forever and noone really said anything. Only advice i could give the little kids in this video is to not Care what other people think or say about you. When you react to them or get upset about what they say you let them win. Ive lived my last 5 years with that motto and im happy. Thats not saying dont care about anyones opinion, but to not care what bullies and negative people say. At the end of the day you know who you are as a person and you have to be comfortable with that. Happiness is a choice, you can choose to be upset and let people get to you, or you can choose to ignore the haters and live your life as a positive one.

Why does this video almost made me cry I'm tony and suffer with nf and it a rough life to live not knowing what will happen next I pray to those who have neurofibromatosis

I was diagnosed at 19years old. I avoided Dr.s all my life up till then. I went into a bad asthma attack so went to hospital for breathing treatment. They always give a lung spray before one. That's when I was diagnosed. Had lung surgery. I'm 46 now, in alot of pain daily, problems see UK nv,ect. Past year I've had 30 from elbow down. Find a cure. Not that it would help but I'm donating my body to science

I have NF1, i always try to live like i don't have it

I have NF and have had 2 surgeries because of it.

I'm 50 so far. NF type 1. I hope yours is mild

I'm jyeahzmen I'm 23 soon to be 24 and I have NF iv been living with it since I was born I have a very large tumor along with other health problems due to NF, it's nice to know I'm not alone but same time feels like I am very lost but I try to push through it as much as possible,this video it's very touching and I just want others to know there are many people who are here for you and I as well will be if anyone would like to talk

I have this .it cause me to have cancer. It hurts .I fell so lost glad I seen this

I have type one and I just found that I have stage 3 brain cancer

I have neurofibromatosis stage 1

I've have NF1... And it took the docorts till I was 16 to notice. I have a toumor in my top right eye which get operated on every 5 years as it grows and can't be just sawed off. Also have a lump on my leg which causes nerve damage. Have hundreds of cafe au lait spots all over my body there is only 1 hospital in the UK which deals with it and I only got a refusal 2 years ago I'm 36 now I found the hospital online and told my doctors I would take a lawsuit in them unless they refured me as they could not help me

My daughter and I both have NF1 , why aren't you showing the tumors

Gi am kevin and im 38 years old I have never metastasis I had it since I was 9 months old and I had a brain tumor back in the early 90s didn't have the technology to take it out and they said it would be more damage to take it out then to leave it in and I went to a church and I couldn't say what I was needing to say so my mom wrote it on a piece of paper and I handed it to the pastor then he put his hands on my head and pray for me and the next time I went to a Shriners Hospital the tumor losses blood supply and I wasn't supposed to see the age I am today and I've been having a lot of surgeries in my mouth to get the tumors cut out with they keep on growing back and I have several surgeries it should not help that much cuz they have grown back and I had to have part of my toe cut off because it did more damage the first time when I had surgery I grew back even worse and I had no other option but to take part of the toe off and now I have to have back surgery to get a couple tumors cut out of my spine causing me a lot of pain I've been in pain a lot because of the tumors and I've been bullied and harassed because of the way I look and because I am special needs I have a learning disability

1:31 (looks at my middle finger in dismay after two surgeries) looks like we're staying together bub

my name is Samantha and I have NF1. I found out whe I was 11 that was 9 years ago. im blind in one eyes, have headaches that last for days, and cant speak for about of the tumors. I have leaning issues and cant be left along, before my family fears I will got dizzy and fall again. and I life with NF1.

I was 4 years old when I was diagnosed with NF1, there had been earlier signs that something was wrong. Growing up was hard, as I had a few therapy classes to go to, to learn to walk and talk properly. The only visible signs I have it are the cafe au lait spots on my arms, shoulders, chest and legs, and fibroma lumps on my chest and back. I also had a learning disability as a result and for most of my school life I had a teacher aid with me, as my motor skills were affected by NF. There are still notable signs that I have it today, but it's not as bad as when I was a kid. Unfortunately here in New Zealand, we don't have many support groups that we can go to, but there is a charity that can be donated to, and soon I will be meeting up with the lady who runs it and meet her daughter who has it, and like the saying goes "I may have NF, but NF doesn't have me"

Hi. my 9 year old was diagnosed at birth. no tumors so far. but learning problems and alot of social issues are our biggest struggle. I am thankful for your video,we do not know anyone else with NF and its hard dealing with this alone.

Thanks Tiffany, I may need to learn more tips and tricks to get this video out to the public.;) I also think more people care than we realize. With time and hard work, we will make more people aware of NF and hope for a cure!

I have nf1 but i don't have no pain just itching and when I'm out with my husband and are friend my back just gets sore but it don't hurt.

I have nf1. I also have add which I was told I'd because of the nf1. Luckily it's not as bad as others tho. (Just some spots and a couple bumps on my wrists. ) I don't want to risk passing it on. I'm only going to adopt kids.

I am 30 , I have NF1 and my dad and his dad had it , it sucks more socially

At night I feel alone because I have NF it effects my left arm and left side of my back and left side of my chest. I got bullied through elementary school and stopped during high school. Lately I been having weird sleep episodes almost like sleep paralysis but it’s every 2 weeks.

Hello my name is Edwin, from Indonesia. I'm 35 years old, and first diagnosed NF when i was 10 years old. There is no cure for NF. We are all same with other people, with some spots in our body 😬

Hi im 13 and i have nf and i have the neromus around my body and they cause pain and i have to get mris every year and i get bullied because of the large café spots..

I'm on 24 and have neurofibromatosis I only have a small tumor on my left arm I'm a lucky one so far

If you want to know where I get my IVCs I go to Riodan Clinic the people there are so nice people.

one of the the parents has it. there is a 50% chance that a child will have it

I have NF

Yo también tengo neurofibromatosis

Help the people with nf..

It runs in our family. My sister has it through spontaneous gene mutation, and my husband has it as well as one of my son's. My husband brother has it his mother, aunt, uncle's cousins and more so my son really doesn't feel different yet. I don't think he will. We knew that at least one would be born with it. He had cafe au lait spots at birth. The pediatrician came in to deliver the bad news and was surprised I already knew. Any Whoo he's living his life to the fullest he can. He's 23 and his so far looks to be minor where as my sister's is severe.

I have NF as well, but I haven’t told my friends about this. :(

My little brother is 9 years old and he has this disease. Do all those who get it have tumors and learning difficulties? I am very worried about him. I think about him all the time. At the same time, I am afraid for my mother.😢

I have Neurofibromatosis; I had tumors that were life-threatening in my throat and optic nerve, how ever they were only partially removed, because of that I have optic nerve gliomas and half an epiglottis, and today I suffer from a tumor near my optic nerve gliomas.

The 1 in 3000 people affected is a strange statistic. Since NF is a genetic disease than it must be localized with a higher probability in some countries or areas and lower in other countries. The probability stated is therefore rather misleading since it probably samples the world population. I must admit that I have not studied the methodology used for NF calculations before making this statement so I'll study further and maybe things will clear up. This comment is for those interested in statistics not medicine.

It isn't common for the growths to become malignant. So if anyone has neurofibromatosis, don't worry.

ı got nf to. ı broke my leg because of deformation at my bone plus ı jumped over an treehouse. whic is 1.75 meters high.

I also have neurofibromatosis and I have a couple tumors growing and it is a genetic reason because my dad has it

I have neurofibromatosis also suck I done a video about it still learning

Tyler is my brother :( danielles son. He went through a severe meth addiction for 4 years because of pain and is doing very well now. He is 17 months in recovery

I have nf and I'm Seth too stay strong brother

Are these cancers I have Nf but nt bad I only have like 3 tumors.

i am from karachi pakistan but i am nt awaerd that do u hv nf1 or nf2

I have a tumor in my back and it hurts this scars me I was a couple mouths when they found it

soy de Venezuela tengo un hijo con neurofibromatosis plexiforme, desde los dos años fue diagnosticado con esta patalogia lo tengo en control desde sus dos años, fue operado en la axila derecha se le estrajo un 25 por ciento de esa masa y desde entonce solo su estudios son de resonancia magnética, actualmente tiene once años y en estos momento se le activo uno en la parte del cuello del lado izquierdo y presenta ramificaciones en la parte cardio vascular están en estudio para ver si operan o en estos momentos le mandaron unas pastilla para ver si se detiene el crecimiento.