Cleveland Clinic’s Neurofibromatosis program offers comprehensive management and treatment of all forms of this complex disorder including NF1, NF2, segmental neurofibromatosis and schwannomatosis.
Пікірлер: 191
@angelaunique36264 жыл бұрын
Bless all people living with this disorder.
@tomrisBusra48924 жыл бұрын
Does it bother you
@rosebud8295 жыл бұрын
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_d46274 жыл бұрын
You lucky
@anitaharrell37164 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😥
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
@prettybarbie92733 жыл бұрын
I pray for everyone suffering from this. I hope you all get the medicine that helps you.
@petesahli39674 жыл бұрын
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 !!!
@rvdhshdxfxgxh90612 жыл бұрын
How dr did your legs surgery Plz reply me My niece is also suffering in legs problem due to neurophebroma
@prophetclementtv29884 жыл бұрын
I have NF1. Something time I feel like dying and leaving this world. But I believe everything will be ok
@eliottpapillion16593 жыл бұрын
hey man ik exactly how u feel. nf1 currently has me in a wheelchair, but we gotta keep pushing.
@pookypoo11692 жыл бұрын
I know you're pain😭
@AmandaWspoon3 жыл бұрын
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.
@eliottpapillion16593 жыл бұрын
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
@woodygramirez15535 жыл бұрын
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 .
@gayboy90185 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
@gracezinkand87945 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 !
@melisaacademia27035 жыл бұрын
I also have NF I have a surgery last year at my back
@blindcharo84554 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!
@briancolson36284 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.
@natashacobbett97375 жыл бұрын
Did I seen that right? Did he just slapped the little girl and try to play it off?
@samslifechanges14895 жыл бұрын
natasha cobbett dude yes I saw the same
@johnsimz93014 жыл бұрын
Lol I saw that
@cooltroop24 жыл бұрын
This cracked me up too hahahaha
@MissJLongfellow4 жыл бұрын
I saw that too
@cassr69653 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.
@elfbi87764 жыл бұрын
neurofibromatosis I have this disease and it makes me want to take my life
@sirbear15804 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.38784 жыл бұрын
Hey. How you been?
@lolpenguin5255 жыл бұрын
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
@madisonmaxey97955 жыл бұрын
lol penguin me too
@petesahli39674 жыл бұрын
My n.f. 1 has taken the site of my right eye!
@robj5682 жыл бұрын
Accept that ur not smart is like putting limit to your self ...like Yeah that is my range
@heatherobermann64335 жыл бұрын
I have nf1 i love you all we are like family.
@nickrykert25725 жыл бұрын
I also have type one.
@heatherobermann64335 жыл бұрын
Cool where are you from im in missouri
@nickrykert25725 жыл бұрын
I'm in Harrison, Arkansas
@harrypotteralways57585 жыл бұрын
Myself and all 3 of my babies have it too
@kattila88395 жыл бұрын
Omggg sameee i have nf t1 toooo sosoosososos
@justanotherrandomperson13594 жыл бұрын
NF1 doesn’t affect my life at all
@lesleyannesmith2034 жыл бұрын
Same here I have had six kids three of them have it it dosent effect me xx
@logansilva40493 жыл бұрын
@@lesleyannesmith203 same in happy and in gratfull that ther nothing wrong with me .
@shahinalam72804 жыл бұрын
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.
@360tamiltips2 жыл бұрын
Go to cmc vellore india
@proxy5061 Жыл бұрын
@@360tamiltips hii i am from India 😬😬😭😭
@rezwanasultana7959Ай бұрын
How can i contact to you? Im also from bangladesh
@aashikhan29045 жыл бұрын
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
@bunnyboo21303 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.
@mbengeblessed717511 ай бұрын
😢 I'm doubting if I'm a patient now 😢. Looks like I am 😭😭
@rawan94a404 жыл бұрын
Is there a treatment for his external appearance?
@katylloyd98773 жыл бұрын
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
@virginiakenney50684 жыл бұрын
I have NF 1 don't know why I can't get help.
@janospareparts30903 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.19802 жыл бұрын
I also have it
@dhruvalshrestha16724 жыл бұрын
I am patient of neurofibromatosis... Since birth.. diagnosed by the age of 19
@kwekbeebee37944 жыл бұрын
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
@petesahli39674 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!!!
@marcelocaceres2746 Жыл бұрын
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?
@S-eraphi-na01 Жыл бұрын
At what age ,it develop in adults
@nickrykert25725 жыл бұрын
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
@gachapotato05915 жыл бұрын
I’m the only one aswell ❤️
@freespirit_174 жыл бұрын
I am the only one as well
@DEJAHOT144 жыл бұрын
I’m the only one as well.
@DeeThaDemon4 жыл бұрын
Me too 😔
@shashiprabhavivek20215 жыл бұрын
What is cost for the treatment
@st4rz222 Жыл бұрын
there is no treatment...
@ibrahim_maly7730 Жыл бұрын
Haw can we communicate with your centre ?
@almay99625 жыл бұрын
I have problems opening my left hand. I am worried about being paralyzed. How often does paralysis occur in nf1?
@natashacobbett97375 жыл бұрын
So do I at times and my right leg and knee pops when I walk it hurts like hell!
@FreddieJrYepes4 жыл бұрын
Lets be strong NF patient
@柠檬课堂4 жыл бұрын
What kind of food should I eat for neurofibromas type 2 everyday? Carbohydrate? fat? protein?
@newcastlewest83975 жыл бұрын
I have it keep getting pain back of my head
@cheezbois93934 жыл бұрын
I guess but it's just one symptom
@metalcorejedi88352 жыл бұрын
I was born with nf1 and my mother had it nf1 she sadly died when she was 34 from complications
@Green-ys3wo Жыл бұрын
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.
@salmankhan-dc1io4 жыл бұрын
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
@syed_taha_ahmed3 жыл бұрын
I've nf tumor in my shoulder. I sometimes feel pain there. Anyone knows the solution?
@Breannastump3 жыл бұрын
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.
@CudaBarr-mt2kj Жыл бұрын
I have it tumers on my spine all over my body it really sucks
@madisonmaxey97955 жыл бұрын
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
@harrypotteralways57585 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.
@madisonmaxey97955 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
@harrypotteralways57585 жыл бұрын
I struggled alot thru school.and the pain of it thru pregnancies. But now it's more like a constant dull ache
@harrypotteralways57585 жыл бұрын
That must be hard some days
@madisonmaxey97955 жыл бұрын
eeyore lover it is but I have had the surgery done 2 months ago and I’m in recovery
@gracezinkand87945 жыл бұрын
Hey I’m 20 with NF1. Anyone else around my age with it?
@Aa-ug4du5 жыл бұрын
Im 17 And I have
@jazzymay92445 жыл бұрын
I’m 18 with NF1
@ryndsy5445 жыл бұрын
22 and have it. Diagnosed when I was 7
@gracezinkand87945 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?
@ryndsy5445 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.
@masayangbuhay50275 жыл бұрын
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?
@noahjackson72275 жыл бұрын
First a pediatrician then a neurologist
@nancycampbell95545 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
@venussproductions45415 жыл бұрын
That’s how I was diagnosed with nf
@kbm1242 жыл бұрын
Sorry to bother you. Please tell me everything okay with your son?
@Diamondartabbey3 жыл бұрын
I whish my country would have a clini but but not enough people have it
@tomrisBusra48924 жыл бұрын
When to find treatment
@retsemeinsuniversee Жыл бұрын
I feel hopeless because of my nf
@wastelandwarriorz665fanacc84 жыл бұрын
I was born wit nf not sure wich 1
@itslovely_d46274 жыл бұрын
Fr
@wastelandwarriorz665fanacc84 жыл бұрын
@@itslovely_d4627 mom died when I was 11 stepparents were addicts so they diddent follow up on hospital stuff
@therealpride55274 жыл бұрын
Same I hate it so much it makes me sad
@papichulo41215 жыл бұрын
I don't know what stage I have
@syed_taha_ahmed3 жыл бұрын
I'm having nf . I've glaucoma since my birth. My whole body has cafe le aout spots.
@softsongsvids.74 жыл бұрын
But I don’t want the dots on my body to grow
@freespirit_174 жыл бұрын
Routinely examine your body , anything that changes talk to your neurologist. And I hope your spots don't grow either.
@sohifah.s.pd.19802 жыл бұрын
Apakah sudah ada obatnya . Mohon bantuannya
@shilpidutta42763 жыл бұрын
I have NF 1
@dr.zoooshort47302 жыл бұрын
I also have it
@sohifah.s.pd.19802 жыл бұрын
I also have it
@tottyv2 Жыл бұрын
Why i got to have this :(
@bobbinslynn165 жыл бұрын
I have neurofibromatosis also
@salmankhan-dc1io4 жыл бұрын
me also have neurofibrometosis before 14years but no pain anything
@nandlalthakur11664 жыл бұрын
I live in nepal.my brother have nf 1.plz help
@truthspeaker22493 жыл бұрын
Am I gonna die?
@st4rz222 Жыл бұрын
eventually.
@truthspeaker2249 Жыл бұрын
@@st4rz222 the owner of this account died at the age of 12, and it has now been given over to me
@marconf48525 жыл бұрын
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
@meekahandy67825 жыл бұрын
I have nf 1
@amandac37615 жыл бұрын
So do I. If you have Facebook, check out Faces of Neurofibromatosis its a support group.
@alyssalynn14035 жыл бұрын
Amanda C I have it too. And have been wanting to talk to others that have it
@meekahandy67825 жыл бұрын
I am on that page already
@natashacobbett97375 жыл бұрын
Me too.
@tomrisBusra48924 жыл бұрын
Does it bother you
@arielknorr46525 жыл бұрын
I have nf1 too
@Raine_okami_games4 жыл бұрын
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
@aashikhan29045 жыл бұрын
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
@harrypotteralways57585 жыл бұрын
I live all the way in Australia. All 3 of my children have it also. Along with me
@nancycampbell95545 жыл бұрын
i have nf so does my dad my 1st born and her 1st born
@nancycampbell95544 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
@janetarmor89574 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
@modern89255 жыл бұрын
Neuromufu What?
@wheezy_mads5 жыл бұрын
Neuro-fi-bro-ma-toe-sis. I hope that helps.
@farahnatashah68005 жыл бұрын
I have nf 1 but can i donate my blood??
@treyskelton45605 жыл бұрын
I have NF 1 and happen to be one of the kids in the video and yes you can donate blood.
@tomrisBusra48924 жыл бұрын
Yes you can donate blood no problem
@sohifah.s.pd.19802 жыл бұрын
@@treyskelton4560 how to it
@sohifah.s.pd.19802 жыл бұрын
Apakah sudah ada obatnya
@farahnatashah68002 жыл бұрын
@@sohifah.s.pd.1980 masih belum ade ubatnya 😔😔..i was about to have a surgery to remove a few of it..
@najibamiri10284 жыл бұрын
I have
@rashidmunir1280 Жыл бұрын
Hi
@intizammemmedov95385 жыл бұрын
Salam menimde oglumda var burnunda sis ora gelmey isdeyirem Azerbaycanda care yoxdu hekim axdariram
@tomrisBusra48924 жыл бұрын
Salam Türkiyə də bu xəstəliyi bilən həkimlər var gələ bilərsiniz
@AidIbrahimovaАй бұрын
Salam.sizde elametler nece idi.nece yasindan sis oldu.oglunuz indi necedi.menimde oglumda var
@ireland41465 жыл бұрын
Ya God is love alright 😉
@petesahli39674 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 !
@janetarmor89574 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💐🌹