It’s nice knowing I’m not alone

@cyber502

5 жыл бұрын

Same

@ashyvinc

5 жыл бұрын

Same

@thekillerprincess8591

5 жыл бұрын

Me too

@vkzahid

5 жыл бұрын

Horror movie fangirl 15 I’m too 🥴

@dombriddon93

4 жыл бұрын

NF 1 right here

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

2 жыл бұрын

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

3 ай бұрын

Good I'm also

@Detvarvaddetvar

2 ай бұрын

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

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

@mikeygoatley9767

5 жыл бұрын

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

@missbell5876

4 жыл бұрын

Same. God bless you both ❤️

@lazy_genuisvalt1607

4 жыл бұрын

Thank you god bless you and your family

@smarnikapandit5591

4 жыл бұрын

Same here even i m dealing with NF

@mohdjunaid4434

3 жыл бұрын

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

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

6 жыл бұрын

Adalia Campbell same

@imahumanandsoareyou1755

5 жыл бұрын

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

@hskIuvbot

5 жыл бұрын

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

@connor1966

4 жыл бұрын

My mom, my sister, and I have neurofibromatosis, they both have glasses but I’m lucky and I don’t yet... we do have to get our eyes checked every single year because of it

@_InTheCosmos_

4 жыл бұрын

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)

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

Жыл бұрын

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

Жыл бұрын

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

Жыл бұрын

So he died?

@alyaziazia6016

Жыл бұрын

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

I have NF 1, too! Thanks for this! ❤

@ravioli4967

6 жыл бұрын

Me too

@heybubs2803

5 жыл бұрын

Mini MangoMyte me to

@landrytaylor8408

5 жыл бұрын

I do to

@seemadudharejiya1749

5 жыл бұрын

Me too

@CuteButPsycho123

5 жыл бұрын

Teresa Vasser same

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

3 жыл бұрын

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

@davidahlers4324

3 жыл бұрын

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.

@speedrunsandmemes

2 жыл бұрын

Had the same

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

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.

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

3 жыл бұрын

I’m sorry about your mother.

@MrJamiez

3 жыл бұрын

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

2 жыл бұрын

Get well soon i too have this in my whole body

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

2 жыл бұрын

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

11 ай бұрын

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

@Alli418

4 ай бұрын

​@@amazingabby25 félicitations 👍

@benishqaiser632

Ай бұрын

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

@benishqaiser632

Ай бұрын

Seen*

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!

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

@vkzahid

5 жыл бұрын

Zubair me to

Absolutely lovely presentation 👌🏽

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

@NAME-yg8sl

3 жыл бұрын

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

@abhijitbhagwat2398

2 жыл бұрын

Aamen

@tottyv2

Жыл бұрын

There is medicine

@darkstarmoonshadow8892

Жыл бұрын

Amen and than you for your support

@your_fav_girl_called_lilly

11 ай бұрын

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

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

5 жыл бұрын

Tropical Hydra ?

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

Жыл бұрын

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

Жыл бұрын

Let me know how feel at 53. It sucks.

@Hk2622__

3 ай бұрын

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

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.

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

Glad to have videos like this to educate others

Çok teşekkürler ,çok iyi bir bilgilendirme

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.

I also have neurofibromatosis. Thanks for this.

@reviewplace8830

Жыл бұрын

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.

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

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

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

3 жыл бұрын

Hello if you email me I may be able to help you find a support group vanessa@childhoodtumourtrust.org.uk

@bobmikey5892

3 жыл бұрын

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

@thakurankitsingh7640

2 жыл бұрын

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

2 жыл бұрын

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

@anaisabellages1970

2 жыл бұрын

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

I have NF1 too thanks for this!!

@seemadudharejiya1749

5 жыл бұрын

Hello.. I have nf . 1

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.

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

5 жыл бұрын

MeggStan link ?

@melaniemillikan165

4 жыл бұрын

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.

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

I have NF1 thanks for sharing the information.

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

2 жыл бұрын

Manifesting good health for yoy

@pamelabarangan1793

2 жыл бұрын

I have also Nf 1

Tysm For this video God Bless 🙏🏾

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

Thanks for this video

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.

Same it's nice knowing I'm not alone

@Shanrcl-nq6ox

3 жыл бұрын

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

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

3 жыл бұрын

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

@bamacopeland4372

3 жыл бұрын

@@nanibournine9629 33 and I have a few

@nanibournine9629

3 жыл бұрын

@@bamacopeland4372 okay so you go regelery to docteur

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

5 жыл бұрын

Night Howlers hi

@okas425

4 жыл бұрын

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

@barryfrancis9640

3 жыл бұрын

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

3 жыл бұрын

@@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

3 жыл бұрын

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

Thank u so much ❤

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

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

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

@user-up5kf1qn3n

Жыл бұрын

你是美国人吗？

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

2 жыл бұрын

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

@elselienthys5917

2 жыл бұрын

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

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

3 жыл бұрын

I have NF1 😢😢😢😢😢

@venussproductions4541

3 жыл бұрын

I have NF1 too

@kelligettner1323

3 жыл бұрын

@@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.

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

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.

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

@FloatingFlows

6 жыл бұрын

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

@MrCaviar

6 жыл бұрын

Megan Howie me to

@samanrhapowerfulsinglegodd5201

6 жыл бұрын

Megan Howie I also have in NF1

@elliemai3836

6 жыл бұрын

I have nf1 too

@morethananame0355

5 жыл бұрын

I also have NF1

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?

Love to all my nf brothers and sisters.

I have Nf1 and was diagnosed at birth

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

@jourie8197

4 жыл бұрын

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_

4 жыл бұрын

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

@bodyrotting2023

2 жыл бұрын

Me too ppl made fun of me

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

@MrJamiez

3 жыл бұрын

Anti inflammatory medicines. See your doctor.

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

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

Glad I’m not the only one

Is it possible to have it with zero symptoms? I've run my genome through a few softwares and one says I have a mutation that correspnds with NH1, but I don't have any of the symptoms. Neither does anyone in my family as far as I know. Is that a possibility?

@vanessamartin7912

4 жыл бұрын

yes its possible. How were you diagnosed?

@sabrinadupre6296

3 жыл бұрын

You could be a carrier, that’s what I am. My dad has it and has the tumors all over. It can also appear further down the line than you think. After doing family research we believe that one of my great great aunts had it.

@jamiesermon3881

3 жыл бұрын

If you live in the UK or elsewhere with free health care just ask about it. You may need a few scans!

I have nf1 since 4 months old , 6 times operation on my left cheek . Now better than the pass

@soebaeta9795

2 жыл бұрын

Aku juga terkna tubuh ku 25%nf1

I have NF1 and only have epilepsy. I'm pretty blessed.

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

I have this, it runs in my family. My mom, be, and I all have it

I have 2 plexiform neurofibromas thankfully they are not too visible I have one on my thigh which is mostly harmless and on my ankle which is the one my doctor watches

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

@Cold_nugget

5 жыл бұрын

shweta panchariya neurofibromas* and I don’t think so

@monulux9252

3 жыл бұрын

No cure

@jamiesermon3881

3 жыл бұрын

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.

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

3 жыл бұрын

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_-

3 жыл бұрын

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

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

4 жыл бұрын

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

2 жыл бұрын

u will be

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

@heybubs2803

5 жыл бұрын

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

@baby_sharvika6319

5 жыл бұрын

Me too

@chloelouise1611

4 жыл бұрын

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

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

4 жыл бұрын

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

@rawr8524

4 жыл бұрын

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

@carolynrugley6655

Жыл бұрын

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

Жыл бұрын

wait what

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..

Im happy that I was diagnosed very early (about 10years) but my grandfather was diagnosed only when he was old. Of course he had his bad lumps removed but it was still not a diagnosis. He has had many bigger lumps in hard spots. Luckily removed sucksesfully. Nlw he has marks of cancer treated but Im not too worried. I dont have many lumps just one on my neck and small on the side. I dont have many problems with learning or eysight, I have never even broken a bone. Only problem to me is that sometimes I get tired and its not normal, I get reeeally tired. One time I didnt have to do homework becourse of it

Awesome

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

Excellent. WIll you be doing one on NF2?

@vanessamartin7912

6 жыл бұрын

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

6 жыл бұрын

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

@vanessamartin7912

6 жыл бұрын

It was a collaboration of both. - and thank you

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

4 жыл бұрын

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

4 жыл бұрын

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

I am in the trial program for Koselugo in adults with plexiform tumors

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

@theleg3nd622

5 жыл бұрын

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

@BenjaminGoodman

5 жыл бұрын

bjorn katsmar I watch sml yes

@connor1966

4 жыл бұрын

I have NF and I watch sml.... how the hell did this happen

@itoldyounottotouchit3336

4 жыл бұрын

Spongette You too? What a foursome

@jamiesermon3881

3 жыл бұрын

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.

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

5 жыл бұрын

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/

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

@khanaedilstatus90

5 жыл бұрын

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

I don't only have NF1 I also have NF2. Its nice knowing i'm not alone.

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

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

I was diagnosed with nf1 DNA test, but I have none of these symptoms, only small (internal) fibroids on the spine......

I have NF1 too

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

3 жыл бұрын

When did you get your 1st tumor

@arslanmalik151

3 жыл бұрын

@@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

Жыл бұрын

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

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

@Shadmannnn

Жыл бұрын

keep fighting

@PrevertedMonk

Жыл бұрын

@@Shadmannnn thanks man

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.

Has anyone have any answers

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

4 жыл бұрын

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

@itslovely_d4627

4 жыл бұрын

@@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

4 жыл бұрын

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

4 жыл бұрын

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. 🤗

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.

I have a segmented case of this

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

@spiritwolf1468

5 жыл бұрын

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

@ghettolicerx2

5 жыл бұрын

i got it from my mom it is made .

@techtalks7632

5 жыл бұрын

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

@cyber502

5 жыл бұрын

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

@adamdekel3783

4 жыл бұрын

same bro

Hi.. everyone 👋 I'm from India..in my family I have a similar problem ..can you guys suggest me any NF1 community group where I can join to get updated about it..

I have nf1 too

my case is so mild I didn't even know I had nf1 until I was 17. I do have a few cafe spots though and subcutaneous fibromas

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

@monulux9252

3 жыл бұрын

I have also same problem

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

@lilly8626

5 жыл бұрын

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

@_InTheCosmos_

4 жыл бұрын

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

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

@jamiesermon3881

3 жыл бұрын

Your a US citizen im guessing

I have nf1

What do you do for the pain ?

@tottyv2

Жыл бұрын

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

I hope and pray we can find a cure

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 KZread. 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

Жыл бұрын

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