Neurofibromatosis Center
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- čas přidán 11. 10. 2018
- Cleveland Clinic’s Neurofibromatosis program offers comprehensive management and treatment of all forms of this complex disorder including NF1, NF2, segmental neurofibromatosis and schwannomatosis.
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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.
You lucky
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😥
I have a nf tumor
Anita Harrell yes nf passed children...best opestion don't Marry
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
Bless all people living with this disorder.
Does it bother you
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 !!!
How dr did your legs surgery
Plz reply me
My niece is also suffering in legs problem due to neurophebroma
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 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
hey man ik exactly how u feel. nf1 currently has me in a wheelchair, but we gotta keep pushing.
I know you're pain😭
I have problems opening my left hand. I am worried about being paralyzed. How often does paralysis occur in nf1?
So do I at times and my right leg and knee pops when I walk it hurts like hell!
Is there a treatment for his external appearance?
What kind of food should I eat for neurofibromas type 2 everyday? Carbohydrate? fat? protein?
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'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
lol penguin me too
My n.f. 1 has taken the site of my right eye!
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?
natasha cobbett dude yes I saw the same
Lol I saw that
This cracked me up too hahahaha
I saw that too
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.
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 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 .
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
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 !
I also have NF
I have a surgery last year at my back
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!
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 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
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!!!
I've nf tumor in my shoulder. I sometimes feel pain there. Anyone knows the solution?
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
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.
At what age ,it develop in adults
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
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?
First a pediatrician then a neurologist
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
That’s how I was diagnosed with nf
Sorry to bother you. Please tell me everything okay with your son?
What is cost for the treatment
there is no treatment...
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.
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 have it keep getting pain back of my head
I guess but it's just one symptom
I have nf1 i love you all we are like family.
I also have type one.
Cool where are you from im in missouri
I'm in Harrison, Arkansas
Myself and all 3 of my babies have it too
Omggg sameee i have nf t1 toooo sosoosososos
I am patient of neurofibromatosis... Since birth.. diagnosed by the age of 19
I was born with nf1 and my mother had it nf1 she sadly died when she was 34 from complications
I have NF 1 don't know why I can't get help.
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
I also have it
I whish my country would have a clini but but not enough people have it
Haw can we communicate with your centre ?
I don't know what stage I have
NF1 doesn’t affect my life at all
Same here I have had six kids three of them have it it dosent effect me xx
@@lesleyannesmith203 same in happy and in gratfull that ther nothing wrong with me .
neurofibromatosis I have this disease and it makes me want to take my life
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. 💚🙏💪
Hey. How you been?
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.
Go to cmc vellore india
@@360tamiltips hii i am from India 😬😬😭😭
I'm having nf . I've glaucoma since my birth. My whole body has cafe le aout spots.
I have NF type 1. I'm the first person in my family to have it.
My mum and I have it
I’m the only one aswell ❤️
I am the only one as well
I’m the only one as well.
Me too 😔
I have nf1 too
When to find treatment
I have it tumers on my spine all over my body it really sucks
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
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.
eeyore lover yeah the doctor won’t be able to get my straight so I won’t be able to move it fully
I struggled alot thru school.and the pain of it thru pregnancies. But now it's more like a constant dull ache
That must be hard some days
eeyore lover it is but I have had the surgery done 2 months ago and I’m in recovery
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.
I live in nepal.my brother have nf 1.plz help
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
Lets be strong NF patient
Hey I’m 20 with NF1.
Anyone else around my age with it?
Im 17 And I have
I’m 18 with NF1
22 and have it. Diagnosed when I was 7
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?
@@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 have neurofibromatosis also
me also have neurofibrometosis before 14years but no pain anything
😢 I'm doubting if I'm a patient now 😢. Looks like I am 😭😭
But I don’t want the dots on my body to grow
Routinely examine your body , anything that changes talk to your neurologist. And I hope your spots don't grow either.
I feel hopeless because of my nf
Apakah sudah ada obatnya . Mohon bantuannya
I was born wit nf not sure wich 1
Fr
@@itslovely_d4627 mom died when I was 11 stepparents were addicts so they diddent follow up on hospital stuff
Same I hate it so much it makes me sad
Salam menimde oglumda var burnunda sis ora gelmey isdeyirem Azerbaycanda care yoxdu hekim axdariram
Salam Türkiyə də bu xəstəliyi bilən həkimlər var gələ bilərsiniz
I have NF 1
I also have it
I also have it
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
Am I gonna die?
eventually.
@@alydia-oo the owner of this account died at the age of 12, and it has now been given over to me
I have nf 1
So do I. If you have Facebook, check out Faces of Neurofibromatosis its a support group.
Amanda C I have it too. And have been wanting to talk to others that have it
I am on that page already
Me too.
Does it bother you
I have
I have nf 1 but can i donate my blood??
I have NF 1 and happen to be one of the kids in the video and yes you can donate blood.
Yes you can donate blood no problem
@@treyskelton4560 how to it
Apakah sudah ada obatnya
@@sohifah.s.pd.1980 masih belum ade ubatnya 😔😔..i was about to have a surgery to remove a few of it..
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
I live all the way in Australia.
All 3 of my children have it also. Along with me
i have nf so does my dad my 1st born and her 1st born
@@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
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
Neuromufu What?
Neuro-fi-bro-ma-toe-sis. I hope that helps.
Ya God is love alright 😉
@@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 !
Well you have already done something good you have taught your children about respect good on you now that is a good parent💐🌹
Like si habalas español
Hi
Peloton