Cleveland Clinic’s Neurofibromatosis program offers comprehensive management and treatment of all forms of this complex disorder including NF1, NF2, segmental neurofibromatosis and schwannomatosis.
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.
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 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 !!!
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 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
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 .
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 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!
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 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 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.
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.
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
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?
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
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. 💚🙏💪
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.
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 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
@@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 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
