Bless all people living with this disorder.

@tomrisBusra4892

4 жыл бұрын

Does it bother you

I’m born with nf type 2, I have the cafèolate spots, but don’t have the bumps yet. I have to go to the hospital once a year to check my body out. I love you all. Y’all are my family.

@itslovely_d4627

4 жыл бұрын

You lucky

@anitaharrell3716

4 жыл бұрын

I too was born with Nf1 and I am so sad that I unknowingly passed it to my children I feel so guilty because one of my babies died and the other go through pain every day I am so sorry😥

@nomadsaurabh9557

4 жыл бұрын

I have a nf tumor

@nomadsaurabh9557

4 жыл бұрын

Anita Harrell yes nf passed children...best opestion don't Marry

@katblake7171

3 жыл бұрын

hello rose I also have the same type thru my fathers side I dont know much my dad n sisters n brothers had nf1 my children also have nf1

I was born in 1960, at the age of 9, i had my first surgery on my left leg, within a year it came back three times the size! At 18 i was the first person to be Diagnosed with n.f. type 1 in Washington state, there were so many doctors that came to see me, in 2004 i had surgery again on my leg and pinky finger, so far it's been successful! Has anyone else had a stroke in their eye ? I have and am curious if it's not just me!! Peace and respect to you all !!!

@rvdhshdxfxgxh9061

2 жыл бұрын

How dr did your legs surgery Plz reply me My niece is also suffering in legs problem due to neurophebroma

I pray for everyone suffering from this. I hope you all get the medicine that helps you.

I have NF1. Something time I feel like dying and leaving this world. But I believe everything will be ok

@eliottpapillion1659

3 жыл бұрын

hey man ik exactly how u feel. nf1 currently has me in a wheelchair, but we gotta keep pushing.

@pookypoo1169

2 жыл бұрын

I know you're pain😭

My dad and I both have/had NF1. I have 2 notable tumors. A large one on my lumbar spine that is inoperable and causes a number of issues. And one on my right palm that I need to have removed again as its starting to affect my grip and hand strength. Im lucky enough to live near Dallas for specialist. I was diagnosed then my father who was more serious but didn't see the right doc at the right time until the first time my hand tumor was removed when I was a toddler.

I'm so glad I found places I can reach out and connect with people that are going through what I am. We can make it through this together we just have to work at it and never give in

I was born with it lost my lower leg just the front half my foot when I was 5. then from my heal to middle of my leg @ 22 I played sports grown up did everything ever other kid did. Got In fights because people made fun of me. Then they got made fun of because they got beat up by someone that wore a prosthetic leg. Don't let anyone tell you that you can't do something. You can do what everyone else can do . Keep you head up . Remember your already stronger then they are. They couldn't handle what your going back through. I'm 44 now work 7 days a week got 3 kids 22 21 14 are there age my youngest has the gene my first two no symptoms . My youngest has a different mom then the first two. There is a lil info of someone living with nf has done .

@gayboy9018

5 жыл бұрын

NF1 Hydrocephalus Due to this disease and my hydrocephalus which is water on the brain I have had 40 brain surgeries 1 bowel struction from all as of yesterday 18 kidney stones I've died 10 times on the operating table speaking of my higher power telling me it is not time anybody can live through this disease I was only given 10 years to live I am 32 now who the heck says when it is your time to go only one person knows when that is and I was told many times by my higher power it is not your time go back so anybody can fight this disease I'm on borrowed time ask doctor say

@gracezinkand8794

5 жыл бұрын

Woody G Ramirez I also have NF. It was passed from my father who had to have his leg amputated when he was 5. He joined his high school swim team and ended up being one of the best !

@melisaacademia2703

5 жыл бұрын

I also have NF I have a surgery last year at my back

@blindcharo8455

4 жыл бұрын

I also have NF and I have had 2 brains Tumours the first on my optic nerve. I’m legally blind now but I still love drawing and want to work in the art field on day. Nf is not a skin condition and it effects everyone differently. It’s important it keep your head up and believe in yourself!

@briancolson3628

3 жыл бұрын

I have nf2. I might lose my leg as well. I'm going through alot right now, I'm just glad to be alive. I wish all of you who have this the very best.

I'm lucky with mine I have a mild case but recently I have been drastically loosing hearing in one of my ears and they had to do an MRI to check for tumors but there was none 😄 but I get bullied because I'm not as smart and I struggle to learn thing and understand things and because I really struggle with throwing and catching

@madisonmaxey9795

5 жыл бұрын

lol penguin me too

@petesahli3967

4 жыл бұрын

My n.f. 1 has taken the site of my right eye!

@robj568

2 жыл бұрын

Accept that ur not smart is like putting limit to your self ...like Yeah that is my range

Did I seen that right? Did he just slapped the little girl and try to play it off?

@samslifechanges1489

4 жыл бұрын

natasha cobbett dude yes I saw the same

@johnsimz9301

4 жыл бұрын

Lol I saw that

@cooltroop2

4 жыл бұрын

This cracked me up too hahahaha

@MissJLongfellow

4 жыл бұрын

I saw that too

@cassr6965

3 жыл бұрын

What's wrong with you? I read this comment before the video and couldn't believe the moment that he 'slapped' the child as you say.. Are you serious? You really think that was a slap. Never in your life have you seen a slap kid lmao.

I am patient of neurofibromatosis... Since birth.. diagnosed by the age of 19

I have problems opening my left hand. I am worried about being paralyzed. How often does paralysis occur in nf1?

@natashacobbett9737

5 жыл бұрын

So do I at times and my right leg and knee pops when I walk it hurts like hell!

I am Bangladeshi and I am Shahin aged 25. I am suffering from this disease. It's just my body. There is no pain or irritation. I think it's growing. For which I am very worried and scared. Thanks for how I did the treatment.

@360tamiltips

2 жыл бұрын

Go to cmc vellore india

@proxy5061

Жыл бұрын

@@360tamiltips hii i am from India 😬😬😭😭

Is there a treatment for his external appearance?

I have nf1 i love you all we are like family.

@nickrykert2572

5 жыл бұрын

I also have type one.

@heatherobermann6433

5 жыл бұрын

Cool where are you from im in missouri

@nickrykert2572

5 жыл бұрын

I'm in Harrison, Arkansas

@harrypotteralways5758

5 жыл бұрын

Myself and all 3 of my babies have it too

@kattila8839

5 жыл бұрын

Omggg sameee i have nf t1 toooo sosoosososos

NF1 doesn’t affect my life at all

@lesleyannesmith203

3 жыл бұрын

Same here I have had six kids three of them have it it dosent effect me xx

@logansilva4049

3 жыл бұрын

@@lesleyannesmith203 same in happy and in gratfull that ther nothing wrong with me .

I have NF1 but I'm not that bad when I was younger almost ended up in a wheelchair but I'm fine I'm like other children now

I also have generation of NF 1...now my cafe’e change to each grain..when I appointment I need to tell my doc..how to do...so worry

@petesahli3967

4 жыл бұрын

I have n.f. one, i also have two wonderful adult kids with kids of their own!! I love them so much! Stay strong and show that love has no bounds!!!

neurofibromatosis I have this disease and it makes me want to take my life

@sirbear1580

4 жыл бұрын

No matter What your Situation and or Circumstances Are you are Blessed beyond Words. You are Beautiful and You Have a Purpose to live and we Need you Here! Yet I'm a Mother of an 5yr son who Has NF1 whom I talk to and let him know he's NO DIFFERENT THAN THE NEXT LITTLE BOY OR GIRL. So I Say The Same To You..live Love and Know that you are not alone. 💚🙏💪

@audriam.3878

4 жыл бұрын

Hey. How you been?

Hello sir I am aashi from India I am suffering neurofibroma and my child also have brown spots I am belong poor family sir plz telme what can I do plz help me thanks

@bunnyboo2130

2 жыл бұрын

Hey, I know I’m replying 2 years late- but if it helps- if your state provides any aide and you qualify for that, then you can get treatment free of cost. If not that, please visit a hospital that has a medical college linked to it. Usually the cost of treatment would be low in such hospitals.

What kind of food should I eat for neurofibromas type 2 everyday? Carbohydrate? fat? protein?

I have it keep getting pain back of my head

@cheezbois9393

4 жыл бұрын

I guess but it's just one symptom

I have NF type 1. I'm the first person in my family to have it.

@Lily_Catt-

5 жыл бұрын

My mum and I have it

@gachapotato0591

4 жыл бұрын

I’m the only one aswell ❤️

@freespirit_17

4 жыл бұрын

I am the only one as well

@DEJAHOT14

4 жыл бұрын

I’m the only one as well.

@DeeThaDemon

4 жыл бұрын

Me too 😔

I have nf1 too

I was born with nf1 and my mother had it nf1 she sadly died when she was 34 from complications

What is cost for the treatment

@alydia-oo

Жыл бұрын

there is no treatment...

Just now learning about all of this. My son has had 4 (about a quarter size) light brown spots under his armpit since birth. I looked it up and found out about cafe- au- laite spots. I always just thought they were cute birthmarks. He's now 2 and is having some difficulties with mile stones and I found out about NF and thought about my son's birthmarks. Should I take him into a neurologist to get checked out?

@noahjackson7227

5 жыл бұрын

First a pediatrician then a neurologist

@nancycampbell9554

4 жыл бұрын

yes because a five spots chances are he has it thats when they usually diagnose nf i know i have it a lot brown spots and a shit ton bumps which didnt start until 13 first bump but brown spots at birth although they 8s no cure still you need know go get your child checked

@venussproductions4541

4 жыл бұрын

That’s how I was diagnosed with nf

@kbm124

Жыл бұрын

Sorry to bother you. Please tell me everything okay with your son?

I've nf tumor in my shoulder. I sometimes feel pain there. Anyone knows the solution?

Americans are lucky because thats where all the specialists or research is done (sure not lucky in terms of medical bills). I live in Australia and im 25...never met anyone with the condition and felt dismeed my entire life.

My daughter 3 year old 2 years ago was diagnosed nf1 syndrome but she doesn't have any body problems can be a wrong diagnosed?

I have NF 1 don't know why I can't get help.

@janospareparts3090

3 жыл бұрын

Dear sir or madam i am suffering from neurofibrometosis since before15 years ago do u have a any treatment if have any treatment please message me ok

@sohifah.s.pd.1980

2 жыл бұрын

I also have it

I whish my country would have a clini but but not enough people have it

At what age ,it develop in adults

sir iam also neurofibrometosis patient before 14 years if u have any treatment .... iam from nepal but now iam working in gulf country in qatar

I don't know what stage I have

My name is breanna I’m 15 I have nf1 a tumor behind my left eye on the optic nerve it makes it hard for me to see I can only see out of my right eye I did chemo of a year and a Half but it didn’t do anything I still have the tumor. I feel like this tumor affects my life a lot I wanna be a nurse but I feel like this is going to stop me from my dream I don’t know what to do I always have negative thoughts.

I'm having nf . I've glaucoma since my birth. My whole body has cafe le aout spots.

I was born with it and nobody in my family has it. I was born in 2005 and was diagnosed at 15 weeks and I have a fibroma in my left ring finger and it grows as my hand does and I am about to have surgery on my hand on Wednesday because my finger is bent all the time to the point where I can’t straighten it

@harrypotteralways5758

5 жыл бұрын

I have a large plexiform on the right shoulder and next it alsp grew with me I've some of it removed but it'll never fully be able too be removed.

@madisonmaxey9795

5 жыл бұрын

eeyore lover yeah the doctor won’t be able to get my straight so I won’t be able to move it fully

@harrypotteralways5758

5 жыл бұрын

I struggled alot thru school.and the pain of it thru pregnancies. But now it's more like a constant dull ache

@harrypotteralways5758

5 жыл бұрын

That must be hard some days

@madisonmaxey9795

5 жыл бұрын

eeyore lover it is but I have had the surgery done 2 months ago and I’m in recovery

Lets be strong NF patient

😢 I'm doubting if I'm a patient now 😢. Looks like I am 😭😭

Haw can we communicate with your centre ?

I have nf me my mom and nana do it feels good not to be alone with this. But me and my mom have the brith marks all over our body and I have some in my Brian to

I have neurofibromatosis also

@salmankhan-dc1io

4 жыл бұрын

me also have neurofibrometosis before 14years but no pain anything

I have it tumers on my spine all over my body it really sucks

Hey I’m 20 with NF1. Anyone else around my age with it?

@Aa-ug4du

5 жыл бұрын

Im 17 And I have

@jazzymay9244

5 жыл бұрын

I’m 18 with NF1

@ryndsy544

5 жыл бұрын

22 and have it. Diagnosed when I was 7

@gracezinkand8794

5 жыл бұрын

Interesting. Always felt pretty alone . I have surgery next month get a tumor removed also found a mass in my breast. Have you guys experienced any issues yet?

@ryndsy544

5 жыл бұрын

@@gracezinkand8794 Nothing major. I have scoliosis and flat feet. I see a lot of doctors to make sure I dont develop a tumor or cancer. Few years ago they've been sending me for blood work, xrays, and ultra sounds. I've always felt alone too. When I grew up there was no information on this disease. Got questions a lot for my lumps. But I'm really happy to see more and more information coming out about it now.

I live in nepal.my brother have nf 1.plz help

I have NF 1

@dr.zoooshort4730

2 жыл бұрын

I also have it

@sohifah.s.pd.1980

2 жыл бұрын

I also have it

@tottyv2

Жыл бұрын

Why i got to have this :(

Hello everyone, my name is Martco, I am suffering from NF1 and I opened a channel where I talk about the problems that neurofibromatos can bring

I was born wit nf not sure wich 1

@itslovely_d4627

4 жыл бұрын

Fr

@wastelandwarriorz665fanacc8

4 жыл бұрын

@@itslovely_d4627 mom died when I was 11 stepparents were addicts so they diddent follow up on hospital stuff

@therealpride5527

4 жыл бұрын

Same I hate it so much it makes me sad

I feel hopeless because of my nf

But I don’t want the dots on my body to grow

@freespirit_17

4 жыл бұрын

Routinely examine your body , anything that changes talk to your neurologist. And I hope your spots don't grow either.

Apakah sudah ada obatnya . Mohon bantuannya

When to find treatment

I have nf 1

@amandac3761

5 жыл бұрын

So do I. If you have Facebook, check out Faces of Neurofibromatosis its a support group.

@alyssalynn1403

5 жыл бұрын

Amanda C I have it too. And have been wanting to talk to others that have it

@meekahandy6782

5 жыл бұрын

I am on that page already

@natashacobbett9737

5 жыл бұрын

Me too.

@tomrisBusra4892

4 жыл бұрын

Does it bother you

Salam menimde oglumda var burnunda sis ora gelmey isdeyirem Azerbaycanda care yoxdu hekim axdariram

@tomrisBusra4892

4 жыл бұрын

Salam Türkiyə də bu xəstəliyi bilən həkimlər var gələ bilərsiniz

Am I gonna die?

@alydia-oo

Жыл бұрын

eventually.

@truthspeaker2249

Жыл бұрын

@@alydia-oo the owner of this account died at the age of 12, and it has now been given over to me

I have neurofibroma by birth my son he is 6yrs old he also neurofibroma sis so plz help me and plz give ur cont no thanks

@harrypotteralways5758

5 жыл бұрын

I live all the way in Australia. All 3 of my children have it also. Along with me

@nancycampbell9554

4 жыл бұрын

i have nf so does my dad my 1st born and her 1st born

@nancycampbell9554

4 жыл бұрын

@@janetarmor8957 so sorry to here that my dad had neurofibermontious idk 1 or 2 he was not the first born i have it as well i was first born my first born daughter has it also

@janetarmor8957

4 жыл бұрын

You know the saddest part with having a nf1 nf2 and nf3 is people who don't know have it in the family don't know understand it I hope just one day the government's would spend more money on finding a cure for neurofibromatosis

I have

I have nf 1 but can i donate my blood??

@treyskelton4560

4 жыл бұрын

I have NF 1 and happen to be one of the kids in the video and yes you can donate blood.

@tomrisBusra4892

4 жыл бұрын

Yes you can donate blood no problem

@sohifah.s.pd.1980

2 жыл бұрын

@@treyskelton4560 how to it

@sohifah.s.pd.1980

2 жыл бұрын

Apakah sudah ada obatnya

@farahnatashah6800

2 жыл бұрын

@@sohifah.s.pd.1980 masih belum ade ubatnya 😔😔..i was about to have a surgery to remove a few of it..

Ya God is love alright 😉

@petesahli3967

4 жыл бұрын

@@janetarmor8957 people seem to think i dont exist when they see me, they openly talk about me as if it's o.k.! I'm 59 now but, man, have some respect!!! I have two kids and have taut them to be respectable to ALL others !

@janetarmor8957

4 жыл бұрын

Well you have already done something good you have taught your children about respect good on you now that is a good parent💐🌹

Hi

Like si habalas español

Neuromufu What?

@wheezy_mads

5 жыл бұрын

Neuro-fi-bro-ma-toe-sis. I hope that helps.

Peloton