What is Neurofibromatosis Type 1 (NF1)?

[@sgt_quack2204]

It’s nice knowing I’m not alone

[@cyber502]

Same

[@ashyvinc]

Same

[@thekillerprincess8591]

Me too

[@vkzahid]

Horror movie fangirl 15 I’m too 🥴

[@dombriddon93]

NF 1 right here

[@davidjennings8426]

I have Nf 1 and im able to work and do stuff on my own. I thank God everyday for allowing me to be here to do what I can

[@malummahlukat]

Hi David my doughter has nf1 and doctor examined her with MR of brain today. So me and wife very sad. Because the stains are in vein of brain. So we have too much sadly.. I want u ask; do u have stains in your brain ? Do you have stains on your body what name is cafe au lait ? I m curiousing what is waiting to my doughter in future ?.. :( so I read your comment and want write here, so hope answer me ..

[@shanzithsalih]

Good I'm also

[@Detvarvaddetvar]

@@malummahlukatHey! I can also anwser your questions regarding NF1 I got it so do on of my sons.

[@adaliacampbell]

I have NF1, I did a paper on it. It was very interesting finding out all of the possible outcomes I’m thankful that I don’t have anything major.

[@ravioli4967]

Adalia Campbell same

[@imahumanandsoareyou1755]

Same! The worst thing my brother, mom and I all have is eyesight that isn’t as great. (We all have NF1)

[@hskIuvbot]

Adalia Campbell how did you find information? I have it but my friend is doing a project and since it’s a rare disease he can’t find a lot of info

[@_InTheCosmos_]

Same some people can lose their hearing but I have it and have no bumps or tumors (only in my brain right in the middle of my eyes were it connects to my brain)

[@ConclusionOff]

@Anthonie White me and you are the same

[@euphoria-rb9bo]

My brother had this too. When my mother gave birth to him we notice that he has a lot of brown birthmarks in his whole body (like he is a dalmatian) so that was first symptoms then he has learning difficulties. And he was also diagnosed with severe Levoscoliosis which make him unable to sit for a long time. Sleeping is also difficult because he has to change position every 2-3hours. Operating his spine might took his life so we decided that we have to just let him enjoy his life. I just hope to those sufferers that, your family loves you and they will be there for you always. Im praying for you guys.

[@tinasepulveda1895]

I didn't know that I had nuerofibromatosis type1 until I was pregnant with my 1st born son. I have had severe medical problems that there's no cure for any of my disorders. Nuerofibromatosis type1 has caused me too many medical problems. My DNA doesn't respond to majority of most medications. I also have had pulmonary problems, liver problems, incurable and intractable pain. Anxiety attacks, severe uncontrable twitching and tremors and seizures due to nuerofibromatosis type1 I'm 61 and they still continue to grow. Had 1 tumor removed from my bottom side and it think if grew back.

[@tinasepulveda1895]

I have severe memory loss and learning disabilities as well. Tiny tumors in my mouth. Had hip replacement year's ago and I have not been able to walk ever since.

[@tottyv2]

So he died?

[@alyaziazia6016]

😢😢i gave birth last month and my son had cafe o lei spots and his body..reading this comments makes me worried about him...

[@Pixtxrn]

I feel happy that people relate to me good bless everyone who has it and pray that it won't get worse

[@mikeygoatley9767]

Thank you Leanne, God bless you. I have NF1 too.

[@missbell5876]

Same. God bless you both ❤️

[@lazy_genuisvalt1607]

Thank you god bless you and your family

[@smarnikapandit]

Same here even i m dealing with NF

[@mohdjunaid4434]

I'm suffering with NF1 and NF2 can any one help me

[@teresavasser4975]

I have NF 1, too! Thanks for this! ❤

[@ravioli4967]

Me too

[@heybubs2803]

Mini MangoMyte me to

[@landrytaylor8408]

I do to

[@seemadudharejiya1749]

Me too

[@CuteButPsycho123]

Teresa Vasser same

[@liamliam7191]

We’re in this together and together as one we can overcome it.

[@yinyang2663]

My only son , going to 12 yrs old, suffering from nf1 with all the signs and symptoms are mentioned in this video. Thanks God we're in HK, the government here are really good, provide all the treatment continuesly to helps my son could adapt with his condition. Wish, the environment could accept him no matter in the school or later on in working field. Thank you HK government, helping my family to facing this situation.

[@amazingabby25]

I am so glad, please let you know if you are fb, I am making a Facebook group for people with NF that aren’t located in the USA! So we can share and help. Sounds like your son is lucky, you care so much for him

[@your_fav_girl_called_lilly]

Wishing you lots of health. I got diagnosed at twelve too. Which ain’t good by what the CHOP doctors said. Good luck!

[@مسلم-غ4م]

​@@amazingabby25 félicitations 👍

[@benishqaiser632]

I live in hk too i have NF2 i have so many doctors here they said it has no treatment

[@benishqaiser632]

Seen*

[@SleepyLeviathan]

I have this. I was perfectly fine but after my mother passed my grandmother took me to the doctor and that’s how I found out. I was lucky there was a tumor on my spine they took it out and about 2 years later they put 2 rods and 17 screws in my back. This video helps me understand what I have better.

[@cole4249]

I’m sorry about your mother.

[@MrJamiez]

I've got nf1 there's a big one on the bottom of my spine slightly above my bum, outside on the skin. Plexiform I believe. Was yours inside your body or? Thank you the comment.

[@sarashaheen7745]

Get well soon i too have this in my whole body

[@Tayskiiest91]

I have nf1. And recently got diagnose with a brain tumor. But it no inside my brain it’s against pushing my left side I felt so alone for many year you tube help me build the confidence I have now 💜

[@MrJamiez]

I'm sorry that you are going through this! I also have nf1. 😒

[@davidahlers4324]

Bless you and may God Keep you! My wife had a tumor on her Brain.They operated and Removed it! I will pray for you 🙏! God can help. I also have NF1 with seizures.

[@RealHealthyGuidance]

Had the same

[@Tropicalhydruh]

I'll tell you all how I got here. I literally just swiped on my keyboard about fifty times and this showed up as the first result.

[@vkzahid]

Tropical Hydra ?

[@bamacopeland4372]

I have NF1 when I met one of the leading doctors in that field he told me I was one of the luckiest patient he has ever seen. I would love to see a specialist in the field every year but of course the VA doesn't care about us

[@nanibournine9629]

how old are you do you have tumers outsid am nina from algeria

[@bamacopeland4372]

@@nanibournine9629 33 and I have a few

[@nanibournine9629]

@@bamacopeland4372 okay so you go regelery to docteur

[@itsblitz3539]

My friend sent me this, I feel special knowing they trust me and letting me see how I can support them as before this I didn't know much about it.

[@Validv0id]

I live with NF1, it's sad that MOST of the people from my school, teachers and students don't accept me. There's also another person at my school with NF1 and the school still doesn't do much. -15 year old girl, Norway.

[@vkzahid]

Night Howlers hi

[@okas425]

Night Howlers Just remember you will always be beautiful no matter what anyone says. Who cares what other people say.

[@barryfrancis9640]

I am sorry dear. Just learn to accept yourself. We are all humans and it doesn't matter who accepts you. All that matters is that you are happy and your family is there for you. If you need help maybe you can dm me on Instagram 'Barryfrancis22'

[@Validv0id]

@@barryfrancis9640 I had completely forgotten about this comment. Things are better now, my family has always accepted me for who I am. My mom also has it, so it’s not hard for her to try and understand. I am at a new school where they actually see the problems I have and take action.

[@Validv0id]

@@okas425 I didn’t even know this comment existed. Sorry for such a late reply.

[@finnysikagai]

It’s nice to know I’m not alone, I have to wear a leg brace for life because of my Neurofibromatosis Type 1, and I also have learning problems, so when I meet people with the same disability as me, it makes me feel better about myself, I’m only 15 but like I said, I love meeting people in the same position as me

[@bodyrotting2023]

Manifesting good health for yoy

[@pamelabarangan1793]

I have also Nf 1

[@anaisabellages1970]

Well, all my life, I felt outcasted, alone, and misunderstood. It is rare to find someone who knows about this condition. My parents were really supportive, but I've always felt like a burden to them...I didn't know there were support groups. I don't think there is in my country, anyway. I wish I could talk to someone who has it. At least, to have someone who can hear me without looking with pity, who could share some concerns, fears, or doubts, to feel supported, at least...People don't get it, and, usually, they say that when I am not at my best I use this condition as an excuse :(. Thank you for taking the time to do such a good resume of NF1...having it sucks, it really, really sucks...I hate it :(

[@vanessamartin7912]

Hello if you email me I may be able to help you find a support group [e-mail]

[@bobmikey5892]

Hey ... here my number 2294215232. Text me.

[@thakurankitsingh7640]

I know that because I'm also suffering from this situation and no one talk to me every one looking on my NF face.. I hate this

[@anaisabellages1970]

@@vanessamartin7912 thank you!!! I don't know why KZbin didn't notify me with your answer, I will send you an email. Thank you💚💚

[@anaisabellages1970]

@@bobmikey5892 do you have whatsapp or telegram? I am Portuguese, living in Portugal, so it's a little bit expensive texting 😁

[@thedenseone6443]

I only have two, one in each of my forearms. They’re pretty small and, while the pain comes and goes, it’s not bad enough for me to get them removed

[@kirbfx]

Could you imagine having not just a very severe case of NF-1 but ALSO be so unfortunate to be afflicted with another extremely rare condition called Proteus Syndrome that literally only affects 1 in 1 MILLION! This was the case with Joseph Merrick aka the infamous “Elephant Man”. He was probably one of the only people in history to inherit BOTH extremely rare conditions. This is why his symptoms were so rare and tragically so grotesque. This is because the symptoms that came with having NF-1 exasperated the symptoms that came with having Proteus Syndrome and vice versa. So, the cauliflower like skin condition that came his Proteus was made many times more horrific because the NF-1 then began to produce large tumors within the nerves of that skin causing him to have horrible cauliflower like, tumor filled growths all over his skin, essentially having both conditions ravage his epidermis. The same went for his bone structure and tissue. His grotesque deformities from Proteus were amplified and exaggerated by his NF-1. To top it off, he had a hip ailment that made his hip None of us could ever imagine let alone comprehend the pain and suffering that was bestowed upon him and the life of solitude and depression it forced him to live. There wasn’t a single documented case of someone having both conditions simultaneously before The Elephant Man and there hasn’t been one since, the odds are so incredibly rare.

[@newkool100]

I have NF1 and I find it very useful and informative. Thanks for the share.

[@vkzahid]

Zubair me to

[@minhajfatima2345]

God please create some medicine or cure for nf.lets pray togather everyone.

[@NAME-yg8sl]

I read somewhere they gave permission to test for a cure or treatment.

[@abhijitbhagwat2398]

Aamen

[@tottyv2]

There is medicine

[@darkstarmoonshadow]

Amen and than you for your support

[@your_fav_girl_called_lilly]

Hi! So Koselgo which is for the plexiform type tumours and the other one that are lumps. Sadly I have an optic tumor so I can’t koselgo because it won’t help. The problem is that koselgo has many side effects. I hope they improve it and make it usable for both types of tumors

[@angrychick9649]

Most docs even the "specialists" mentioned know little or nothing about NF.My neurologist said he had 6 patients,including myself, in a 30 year career on two coasts,that had NF. He at least knew the basics.So many know nothing

[@reidsjaaheim8237]

Dated a girl who has it. It ran in her family. It seemed like they were able to live mostly normal lives, but if I remember correctly, there were always risks of complications, and it becomes a bigger problem as they get older.

[@OddSwiftGoose]

I have NF1 and Im in college. I'm 21 and It doesn't becomes a bigger problem. It get easier as you get older because you are use to having it. Its hard when you are little

[@TheNeuroticjetfan]

Let me know how feel at 53. It sucks.

[@Hk2622__]

My father has it nd he is also completely fine 💛​@@TheNeuroticjetfan

[@RustyR3volva]

I have NF1 since birth, my GP always got student Drs to diagnose me to see what I have, well most of them got it right.

[@pattodd6636]

I myself a 34 year old male who is living with NF1 was only given 10 years to live granted I have other neurological disorders and other diseases such as hydrocephalus which is known as water on the brain granted I've had 40 brain surgeries do to this disease do to the Nora fibroma that's in the cerebral cortex of my brain it is a beautiful disease a life inspection C does not determine someone's Fate by a doctor because 10 years old is a long way away from 34 years old that was 24 years ago and I'm still alive still taking granted I have seen the light and felt the pain I'm still here that was only on the table during brain surgery nothing to do with the neurofibromatosis type 1 anyone who keeps a positive attitude can beat this disease

[@inook3i]

sending my prayers to everyone who has it, I hope you all know you are beautiful and loved ❤️

[@thijsholdijk9855]

I have NF1. (In a very mild form thankfully). Can confirm that yearly checkups are not necessary. I’m 25yo and can’t remember if I ever had one. Only had a surgery once to remove a bump on my chin.

[@Meatloafedup]

Thank you for this video. I am here learning about a foster baby I recently got, and trying to learn everything I can about this!

[@SonicBoss1991]

I have just been diagnosed with NF1 and I have the eyesight problem and the skin blotches and coffee marks, I'm not sure what is going to happen yet but I hope I'll be ok.

[@janetarmor8957]

I have the Tumors and a coffee mark on the outside and people can be cruel I just say to them if I can live with it why would it worry you some people think that if I touched them in anyway that they can catch it😔

[@chrisgomez1840]

u will be

[@pigeon2653]

I have nf type 1 and no one in my family has it it's a genetic mutation

[@spiritwolf1468]

I'm the same way. I have and no one else in my family has it.

[@ghettolicerx2]

i got it from my mom it is made .

[@techtalks7632]

my father had this. I am suffering soo much because i have NF

[@cyber502]

Same, It caused me to have a tumor on my right shin, and I might have a brain tumor

[@adamdekel3783]

same bro

[@coco3211-channel]

somebody help also have intractable disease I was bullied for being different.(T . T)

[@jourie8197]

ଓここଓ ik it’s easier said than done but stay strong just know that u r beautiful and amazing and u deserve the infinity 💜💜💜

[@_InTheCosmos_]

*ଓここଓ you were made special for a reason* 💚💙 #EndNF

[@bodyrotting2023]

Me too ppl made fun of me

[@shwetapanchariya1320]

Is their any treatment for neurophybromytosis... i m having this from 14 years

[@Cold_nugget]

shweta panchariya neurofibromas* and I don’t think so

[@monulux9252]

No cure

[@jamiesermon3881]

Theres treatment but no cure, I've had 4 operations to stretch out a blood vessels. The 4th time they opened me up they saw it healed itself! Never give up hope.

[@NotYourTypicalMermaid94]

I have nf1 too. I'm glad I'm not alone.

[@陈香吉]

你是美国人吗？

[@shigehirotsuzuki4895]

I also have neurofibromatosis. Thanks for this.

[@reviewplace8830]

Do you live in Japan? I’m asking because my family and I are planning to move there. And we are looking for a pediatric NF clinic.

[@elselienthys5917]

I had neurofibromathosis type 1, when I was 8 or 7 years old, my back was operated on for the first time. e. when I was 12 too. my back was 180 crooked then. During that operation I had 2 cardiac arrests. (because my heart had a very small space.) Since then I have been permanently in a wheelchair. and I've been calling myself a giraffe ever since I can talk. (because of the spots.) it is also a favorite animal of mine.

[@vanessamartin7912]

Childhoodt Tumour Trust have a giraffe called Patches as their mascot.

[@elselienthys5917]

@@vanessamartin7912 i knowI have many, that's why I call myself a giraffe. 🙂

[@Tsume_-]

Hi, my name is Davide I'm from Rome, I am diagnosed with nf1, I had café au lait and freckles in groin when I was a kid, lots of problems in school(narcolepsy, adhd...) I developed then those tumors. This gave me lots of problems finding a job, I a have been looked at like a leper, someone who shouldn't work for them because "what if you get sick?" and stuff, I felt pretty useless. While recently my father got a glioblastoma grade 4 diagnosis this month and I know I could risk it as part of this disease, I am scared of having a child in the near future and cursing him with something like I have and might degenerate in nf2, I always feel the urge to not let people see "the bumps" I have like on the back. Recently I went to a specialistic visit and they found a ramification on my scalp

[@vanessamartin7912]

Rome has a good NF centre have you contacted any of the NF organisations like Linfa? NF1 does not become NF2, they are 2 completely different conditions

[@Tsume_-]

@@vanessamartin7912 I did I'm in cure at Umberto I as for now, they keep it under control

[@mcnugget1627]

To those with nf one Im making another nf video but like relatable things E.g. "things we often get told | Naurofibromatosis" or "neurofibromatosis and emotions" or "the struggles | Neurofibromatosis" Any other ideas or what youd like to see??

[@vkzahid]

MeggStan link ?

[@melaniemillikan165]

I don't know if anyone can relate, but I use to get picked on for my Cafe au lait spots and for my few small tumors.

[@sirbear1580]

To WHOMEVER Has NF1, Please Know And Understand That You Are Truly A Blessing From GOD! (Also I'm A Mother Of An 5year old That Has NF1)

[@laurens5622]

I have NF1 😢😢😢😢😢

[@venussproductions4541]

I have NF1 too

[@kelligettner1323]

@@laurens5622 How are you a blessing from God? I come from a family who have NF1 AND NF2 and other forms of NF. I Myself have NF2 I grew up with My own grandma and all of her sisters and brother having NF1 my grandma and her mom were covered long before I could remember them not having fibroid tumors all over their body. My great aunts and great uncle were the same way. My mom's two brothers had NF. My Uncle Dennis had NF1 and my other Uncle who was my Uncle David had NF2 was was blind and had several brain tumors when he was younger, teen years and when he was an adult. Both of my Uncle's passed away because of neurofibromatosis. I have had so many family members pass away because of this disease. I myself have NF2. I have never thought of it as a blessing or a curse. But please don't feel obligated to tell people that a disease is a blessing.

[@aaronking2407]

I also have NF 1 I have scoliosis, have Cafs everywhere and have problem with my eye sight but I feel kind of lucky my scoliosis isn't that bad and I have to wear glasses to see better so I got of kind of light compared to other people

[@meganhowie9694]

cool video (I have NF) and it was more useful than doctors...

[@FlowingFlows]

plz doante any amount paypal.me/pools/c/80x64UvMUj

[@MrCaviar]

Megan Howie me to

[@samanrhapowerfulsinglegodd5201]

Megan Howie I also have in NF1

[@elliemai3836]

I have nf1 too

[@morethananame0355]

I also have NF1

[@arslanmalik151]

I have a Neurofibromatosis type one . I had a tumor removed back in 2007 . Since then the back of my neck where I got it removed is showing signs it is slowly coming back . The biggest challenge was the awful leaning disability I have. At the time I was working it would affect my work.

[@heybubs2803]

When did you get your 1st tumor

[@arslanmalik151]

@@heybubs2803 I had it when I was a baby. Now it looks like it may be growing back . And I hope it's doesn't come back .

[@saimaasad5198]

apny iska treatment kahan sy krvya mjhy ye issue ha or bht zayda tumour ha full body pa plz help me guide kr dy iska koi b treatment ho

[@soill.fishing2343]

Same it's nice knowing I'm not alone

[@Shanrcl-nq6ox]

I apparently have this ,,is it life threatening I’m kinda scared :(

[@justbored195]

I dont have a diagnosis for it, but when I was born my mom said the doctor helping her knew right away something was up with me.

[@BenjaminGoodman]

I have it as well, just know that no matter how you look you are beautiful, even with NF ☺️♥️

[@theleg3nd622]

Noice we have two things in common we have nf 1 and we both watch sml i think

[@BenjaminGoodman]

bjorn katsmar I watch sml yes

[@itoldyounottotouchit3336]

Spongette You too? What a foursome

[@jamiesermon3881]

I haven't got it bad luckily, not much physical signs except for the coffee stains lol. Just high blood pressure and shrunk blood vessels luckily for me.

[@seritanichole3612]

Glad to have videos like this to educate others

[@rawr8524]

my little sister has hf1 and she is the most beautiful person i know inside and out, she is 10 but sadly she is at a kindergarten reading level but she's getting better with reading. i love my smart beautiful girl

[@itoldyounottotouchit3336]

Hannah F hf1 or nf1? Just making sure there isn’t a typo.

[@rawr8524]

I TOLD YOU NOT TO TOUCH IT! nf1 it was a typo oops

[@carolynrugley6655]

Hi, my seven year old son, has an F1, which heard from his father, I have a daughter, it skips her, and she does not have it, but my son does, he also has ADHD, and difficulty learning. He is seven, but functions at a kindergarten level. We are in the process of having an IEP for him as well. Is it a regular channel is class. Amongst his peers. But it’s nice to know I’m not alone, and that, even though he is alone with having this, I hope I can do right by him to help support him, in his life, my son name is Ryan with a sweet boy. I love him very much. We are all beautiful within our heart and soul. In F1, we can be survivors, I know that my son will, my children’s father has dealt with having enough one, he has, finger, visual impairment, and scoliosis, I believe, he does have multiple disabilities, therefore, he lives in a supportive living, Drew, Westside, original Center, referring to my children’s father, in with my phone in Harry, the NF, one, neurofibromatosis.

[@Shadmannnn]

wait what

[@ravindulakshan6527]

May I know if there is hope for a cure for neurofibromas type 1?

[@kingbofshop]

I wish but it's like asthma it will never truly go

[@hiamit33]

Me and my twin brother have NF1. Is there any therapy that can help to reduce or eliminate it without surgery?

[@MrJamiez]

Anti inflammatory medicines. See your doctor.

[@AwesomeDesertTrains]

I have extremely mild nf1 so I won't get the cancerous fibromas

[@lilly8626]

Same are you affected at all ? Like are there any signs on you I have a tumor in my left ear canal

[@_InTheCosmos_]

Ÿà fàv Dárkškîñ well some people get ADD/ADHD from it (I have ADD and a tumor in my brain)

[@starkeyedits3984]

I am 17 and i have 47 neurofibromas over my entire body, I’m very scared that it will change, no one in our family has it so i have no idea how’ve i got it.

[@陈香吉]

你是荷兰人吗？

[@phutipooe8760]

Absolutely lovely presentation 👌🏽

[@ashyvinc]

I've got the small lumps and they're so annoying like the one on my forehead, neck and mostly my left side

[@xxlocketxxjewels868]

I am 12 and I have my nf1 and I have a huge birthmarnk on my leg there is also a big lump on it that hurts and alot of birthmarks on my body. I really hate it

[@yukiwrites]

xXLocketXx jewels i know how you feel. Lucky for us, plastic surgery exists. Stay strong honey. ❤️

[@itslovely_d4627]

@@yukiwrites you have neurofibromatosis two it's the worst but I'm sacred of plastic surgery if you get the bumps removed want it grow back

[@yukiwrites]

therealstar479 therealstar479 There's always a chance to come back, that's the kind of disease. Unfortunately, we know that there is no cure, but it is important to learn to live with it. It's hard, but that's all we have left. *hugs*

[@yinyang2663]

My son does,, exactly the same as you going to 12 yrs old. you are not alone. Be strong. Seek for medical assistance in your place. Wish your government provide medical schedule to make you feel better. 🤗

[@sabitduran3379]

Çok teşekkürler ,çok iyi bir bilgilendirme

[@katiejames153]

Will it’s hard to have nf1 as an 8 year old

[@davidahlers4324]

Same Here ☺️! Makes me feel alone also. Now my Seizures are what they call Refractory. I used to Drive and work but suddenly changed! Now at 56 I am for the Last 3 years isolated at Home. Miss work friends and Particularly my freedom of Driving! Subaru WRX I have! I Love the car but can't drive it! I also developed Deep Depression and Anxiety. Better now that I Developed my Faith in God and Jesus Christ! I do have a wife and daughter and Grandkids. A real Blessing! No you are not alone 😃! Been Dealing with this all my Life. Some times Better than others for a period. Bless you and may God be with you! I know how you feel.

[@lisastonehouse923]

Has anyone have any answers

[@parmidaaa9135]

It hurts when people ask what's wrong with my skin

[@HaagseUkie070]

I have NF1 too thanks for this!!

[@seemadudharejiya1749]

Hello.. I have nf . 1

[@jonathanstarling1082]

I have nf1

[@neetabhatia98]

I have nf please mam koi treatment btao please please 😥😥😥😥😥

[@neetabhatia98]

Hanji koi treatment nhi hai iska🙏🙏

[@NEUROFIBROMITOSISguruji]

Baccho ke liye aa gai hai medicine for plexiform neurofibroma par adults ke liye nahi hai

[@lightyagmai1986]

Have have nf but I don't what one but one of my eye is week and small and the other is normal

[@khanaedilstatus90]

mine 2... my face left side is effected flesh if left side face is hanging down ...n soiled i dont have teeth on my left side ...i cant hear tooo

[@bappamandal3360]

I have NF but don't know is it NF1,NF2 or NF3..I have six tumors in my body..one is newly appeared on face..

[@fidelroman3983]

Yikes every year I haven't gone to the Dr for this since I was 14 lol

[@jamiesermon3881]

Your a US citizen im guessing

[@okaymadi_1864]

I’m 10 and I am suffering from this condition i have had it ever since birth and still have it. One of the worst things about it is I have spots and I have been made fun of cause of those spots.

[@vanessamartin7912]

Hello Peppa Pig. Are you in the UK? there is a charity called Childhood Tumour Trust that has days out so that you can meet other children your age who have NF1

[@okaymadi_1864]

vanessa martin I’m not in the UK but I do appreciate that you tried to help me thanks

[@madislater3430]

yes we will always have it unfortunatly its a chronic illness

[@madislater3430]

@@vanessamartin7912 how can i look into that?

[@carolynrugley6655]

Hi, my name is carolyn, I’m a mother to a seven-year-old, who also has MS one, I live in California, I have a beautiful seven year old boy with NF one, are you too often asked questions about why he looks different, because of the café au lait spots, in which he inherited from his father, I wish that I knew edison if you were going through this ordeal, he goes to a regular school as well. He has not told me up to that makes fun of him, which I hope there’s not, but I can’t even imagine what that feels like and my thoughts and prayers are with you. I am so sorry, that you had to endure that. No child should have to. Much love and regards sincerely, Carolyn and my son Ryan, who also has neurofibromatosis. ❤

[@Master0fDonkeys]

I have cafaolie, weird freckle placement, and neurofibromas. Just out of curiosity if you have it does it hurt for you?

[@heidi7079]

Can I donate my blood or organs if I have NF1?

[@aleksandradimitrijevic1005]

You can donate blood but i dont know if you can organs

[@mcnugget1627]

I have it, I was diagnosed at 7 months old The doctors said I was born with it because I had the obvious signs in looks, so they wanted to do a test, took 7 months to come through

[@John_Oleary]

its really hard to find affordable treatment since all the side affects are so vast i have not seen a doctor for anything to do with nf1 in 12 years

[@vanessamartin7912]

where do you live? you should have a check up once a year

[@John_Oleary]

@@vanessamartin7912 in the US very hard to find affordable insurance that covers scans and stuff like that

[@vanessamartin7912]

@@John_Oleary oh yes I know it's very different in America. I don't have an answer I'm afraid

[@John_Oleary]

@@vanessamartin7912 I have not had any major problems though thankfully so I guess am lucky

[@MrJamiez]

I think its dumb that you have to pay for medical expenses. Here in the UK England, our health care is completely free. All surgeries/operations. We have a free health care.

[@michelledyason7663]

I have nf1 and I have never had regular health checks as the saying goes I have been lost in the system

[@baby_sharvika6319]

I have NF any treatment ???😢😢😢

[@vkzahid]

www.clinicaltrialsarena.com/projects/koselugo-selumetinib-for-the-treatment-of-neurofibromatosis-type-1-nf1/

[@BuzryHaproMandalorianHunter]

I used to have a Plexiform Nerofibroma on my side that bothered me for years till I had enough of it and told my parents I wanted it out.

[@sheikhyasmine9427]

I want to know more about nf1 my son have this

[@aafiyaalfiyaathayi156]

Assalamualaikum

[@whiteowl7631]

Me too it's nice to know I'm not the only one sometime I feel like I'm alone😕😕

[@heybubs2803]

Ann murley your not 😭😔I don’t want to get the dots

[@baby_sharvika6319]

Me too

[@chloelouise1611]

Just Another Persons Life I’ve had NF for nearly 17 years and I got one on my stomach n neck, believe me don’t be upset. N self continuous with them c

[@sandyhearn8332]

My 1st husband had it, he had some small lumps but then he got a large tumor on his arm, he had it removed, then they found cancerous tumors in his lungs which killed him at age 38 in 1996. We knew it was hereditary and chose not to have children. His twin brother has learning disabilities

[@adaliacampbell]

I have Nf1 and was diagnosed at birth

[@Shellyz2u]

Not many people know this about me, but I was born with this birth defect. It was inherited from my father. I do indeed have ADHD and a learning disability although I have amazingly overcome those difficulties. I'm very fortunate in that my NF1 is very mild. I many friends who have it to disfiguring levels. Also have friends who have an NF2 which is a much more serious condition. The only reason why I share this is I ran across the video on KZbin. I guess we all have our Oddities. I was only five years old when I was diagnosed. Way back then there wasn't much know about NF. While there's much more known now I still find it difficult Define a neurologist who understands the condition and can address my concerns. I certainly hope in the future this changes for the younger generation

[@carolynrugley6655]

Hi, my seven-year-old son, has an F1, in which he inherited from his father, and his father, inherited from his mother, therefore, my son has it, my son, Hospital has ADHD, and some learning difficulties as well, he also has, the café au lait spot, as well as having a lump, located on his left side, this is really starting to make more sense, I’m still learning about it, but now I’m looking at this, and understanding he has ADHD, and this associated with having neurofibromatosis, thanks, I appreciate that, because I did not know a lot about it and again, I’m still learning, just put the lot at perspective about my sons, disease, he’s a sweet boy, my son is seven. Bcc

[@chloemorrison455]

i have nf and i have had sharp pains in my back off my legs for years now and i have had yest and mris to find out what is causeing the pain can it be nf what is causeing the pain

[@samiranasser6713]

i also have NF1 and I feel the same type of pain, in my whole body. My doctor said it might be neurophatic pain, the lumps are compressing the nerves and causing this sharp pain. He recommended me medication made from cannabis to control the pain

[@chloemorrison455]

@@samiranasser6713 for me they checked for lumps but there was none

[@TyroneBiggums789]

I have it from a genetic mutation, neither parent has it. Woohooooo!

[@mr.tabares4484]

BmoreBirds22 same here

[@minecraftlol51]

same

[@queenthoria7483]

BmoreBirds22 me too! When I was a kid my parents would call me a mutant (like in X-Men lol)

[@AwesomeDesertTrains]

Same

[@MrCaviar]

It can be passed by genes even though your parents do not have it

[@fatsaxon3765]

Love to all my nf brothers and sisters.

[@triciarichards161]

My son has recently been diagnosed with this ,he has had a fractured arm when he was a baby now he's 7 an is a waiting surgery in the coming months ahead ,I'm wondering should I go ahead with surgery or wait right now he has full use of his arm and cheerful, I don't want to change that ,don't know if it may be risky doing the surgery??

[@vanessamartin7912]

hello I am not sure which country you are in, but we are a uk based charity supporting children young people and their families affected by NF1 - if you are on facebook check out our support group facebook.com/groups/209205242831552/

[@joshuazawodsky5783]

I have NF1 it made me not ablw to play football due to the loaction of two of my fibromas but It is nice knowing im not alone is it possible to skip generations at all?

[@ConclusionOff]

I'm proud of having nf1 sometimes I'm scared but have to live life

[@Shadmannnn]

keep fighting

[@ConclusionOff]

@@Shadmannnn thanks man

[@patilprajakata225]

I have NF1 .it not passed my parents or my family.it's totally mutation .I am a agriculture engineer,and I am a professor in a agriculture college,as well I teaches 12th science students.I accepted that no cure for NF1.Now I am 31 years old.let see...

[@sarbdeol2497]

I have nf 1

[@NEUROFIBROMITOSISguruji]

same , i also got NF 1 through mutation , and i am trying to accept it , now i am 1 year bsc nursing student..... NF affects me and my college life but i never give up.......and now i am university topper in my first semester exam 💐💐💐

[@bioparticules]

What do you do for the pain ?

[@tottyv2]

Wim hof to feel better emotionally or weed And pain killers to stop the physical pain

[@mcnugget1627]

1 out of 8 women get breast cancer, so now what's our rate of it now? When having nf1?

[@thordrjones2946]

My 8 year old son has NF1 I found out when he was a little baby he had a few cafe spots and my mom and I wonder what that was no doctors where we live knew about it except one we montier him all the time he has a tumor on his back close to his spine more cafe spots everywhere now and idk if it's effecting his eyesight because he blinks a lot at moments way to much does anyone else have that as well? We have to take him to another city for MRI to monitor his tumor and how it's doing and see if he needs surgery he does have tough time learning but he gets it done he is a normal little boy and very sweet and kind I always fear for him but I pray for him constantly he got it from his bio dad's side (this is mom btw) hate it becuz I wish he wudve told me that he has it too and educate me about it but it's over and done with I love my son he is my 1st born and I promised him I would protect him always i will always be there for him and help him go threw this journey with NF1

[@vkzahid]

www.clinicaltrialsarena.com/projects/koselugo-selumetinib-for-the-treatment-of-neurofibromatosis-type-1-nf1/

[@zannaxz]

i have small lumps all around my body under my skin that I fear are getting bigger. and I have brown patches over me. I am so scared that I might have nf1 :(

[@tottyv2]

Damn

[@onuspromis7166]

Speak to a doctor

[@pde445]

Did they?

[@zannaxz]

@@pde445 ive gotten more lumps yes. i spoke to a doctor but they didn't really care about my concerns

[@moveme91]

all those referrals and you didnt mention PT! we treat low tone, balance issues, msk issues, gait problems...

[@vanessamartin7912]

We apologise, it wasn't a finite list. But absolutely yes you are important in many patient's lives.

[@catlife738]

I’m lucky that I have a sort of mild case of this.The main things that effect me are my voice(very weird tone and very very hard to understand) and my handwriting (very bad ) I don’t have any pain and and getting A’s in every class(honor classes)it does somewhat maybe effect my social skills though as I only have 1 or two friends who are not that close

[@zaminhasan4300]

I am a nerofirboma patients piz suggestion and medicine

[@briananderson7122]

I need my question answered please, will an increase in testosterone cause my tumor to grow?

[@monulux9252]

I have also same problem

[@RockyMountainMechanic]

I had no idea I had NF until I had a seizure and was given a full body X-ray. I always thought that everyone lived in a mild amount of discomfort but it turns out normal people feel... Well normal 😂

[@Iampregnetwithringosbaby]

as some one who has NF1. I have 1 tumor in my back. It makes my back hurt a lot. and I have to have a surgery every 8 moths in-till I am 18. Years old and it will be every 3 years.

[@tottyv2]

You could try wim hoff breathing if you ever feel down it makes you feel so carefree and its like this feeling where all your problems in life just go away for that time untill they come back you can do it again kzbin.info/www/bejne/qqrFgJxqnc-NfLM .

[@Shadmannnn]

@@tottyv2 aw shit thanks

[@adamhouse6205]

I have nf1. feel like I'm the only one who have it

[@chloelouise1611]

I do too

[@ihaveonebraincell6694]

I do and it came wuth hdhd

[@nanibournine9629]

متی ظهرت علیک الحبوب

[@ashleymurebwa4637]

I find it difficult to deal with it.... l often get judged a lot and it's difficult for me relationship wise... no one wants to be in a relationship with me.

[@dianahaberkamp1564]

Excellent. WIll you be doing one on NF2?

[@vanessamartin7912]

Childhood Tumour Trust wont be producing one on NF2 as it is a charity for NF1, however it would be a good idea if it was done by somebody.

[@dianahaberkamp1564]

So this was created by Childhood Tumor Trust? I thought it was "Healthsketch"? It's very nicely done.

[@vanessamartin7912]

It was a collaboration of both. - and thank you

[@shoxistashoxidova264]

Hello everyone, I have a cousin who is 3 years old, doctor diagnosed her with N1 , we are so afraid and we are all in stress now, how her future would be who can tell me about this illness, what should we do for her ??? 😭😭😭😭😭

[@cdbp7363]

Hello ! A diagnosis at 3 years old is very early so there is many thing to do (and time) Ask to the doctor who diagnosed N1 what you can do. To reassure you, in my case I had see many specialists during my childhood but now everything is fine, I am at university and I live a normal life.

[@vanessamartin7912]

Hello - I am unsure where you live but it may be worth seeing if there is an organisation in your country who can help support you. Childhood Tumour Trust are based in the UK but they have a facebook support group that welcomes everyone whereever they live..

[@Sushreescreation_607]

Sir I have nf 1.. nf 1 can cause cancer ??? Blindness and paralysis... Plz tell me...I am very worried for this

[@BhakthiVlogs589]

Don't worry I'm also having Nf1

[@Sushreescreation_607]

@@BhakthiVlogs589 sir plz tell me nf1 can causes blindness ,cancer, paralysis??? Nf1 made me cry everyday 😭😭

[@Torobuck]

Don't know about cancer. But I have high eye power.

[@Sushreescreation_607]

@@BhakthiVlogs589 your eye side are perfect or not till

[@Sushreescreation_607]

@@Torobuck how old are you

[@arnabbiswas9098]

I have a neurofibroma. Any medicine please tell me. I am very sad😢

[@firelance7921]

my older brother john coxall died from this in 1998 he was 38. thankfully we had different fathers so im clear. but it fucked him up big time paralysed from neck down

[@dagligtliv6572]

First I know I have marks but didnt knw its quite serious skin problem. Until I got pregant and my first born to second child got EP. Now I having eye sight problem and don't know yet what goin on me..😢 does anyone have known some group that I can join in and learn about NF1? I'm so worried not only by myself but my 2 child have it most NF1.