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Gi am kevin and im 38 years old I have never metastasis I had it since I was 9 months old and I had a brain tumor back in the early 90s didn't have the technology to take it out and they said it would be more damage to take it out then to leave it in and I went to a church and I couldn't say what I was needing to say so my mom wrote it on a piece of paper and I handed it to the pastor then he put his hands on my head and pray for me and the next time I went to a Shriners Hospital the tumor losses blood supply and I wasn't supposed to see the age I am today and I've been having a lot of surgeries in my mouth to get the tumors cut out with they keep on growing back and I have several surgeries it should not help that much cuz they have grown back and I had to have part of my toe cut off because it did more damage the first time when I had surgery I grew back even worse and I had no other option but to take part of the toe off and now I have to have back surgery to get a couple tumors cut out of my spine causing me a lot of pain I've been in pain a lot because of the tumors and I've been bullied and harassed because of the way I look and because I am special needs I have a learning disability

great love to all of us with neurofibromatosis from Denmark who also have nf1

May I know if there is any medicine being tried in the world to control or cure this disease? Can I hope for a cure?

I have tumers all over my body in my back hurts really bad

I'm late to the post here. I too have NF and I'm 62 . To all these beautiful kids be strong and stay positive. God Bless You.

Im Rick i have type 1

Buenas tardes y para Neurofibromatosis no podrían hacer una vacuna o quemar con láser el tumor que ataca los nervios es solo opinión saludos.

I HAVE N,F, 1, AND EATING RIGHT TAKING HERB'S HELP A LOT, AND TALKING ASHWAGANDAHA ( KSM,,66 ) HERB HELPS A SUPER LOT IT CONTROLS MY LIFE my mind my thinking, TRY TAKING IT

I'm 50 so far. NF type 1. I hope yours is mild

My little brother is 9 years old and he has this disease. Do all those who get it have tumors and learning difficulties? I am very worried about him. I think about him all the time. At the same time, I am afraid for my mother.😢

Nf1 is the reason I wish I was never born in the first place

I too have nf 1

Mí consejo es que vivan una vida normal, no se tengan pena, ni limitados estudien una carrera un oficio y a laborar, nada impide que se realicen como personas y no tomen ningún medicamento. Procuren hacerse cirujía común buen cirujano dermatólogo y aceptence de corazón, amense y para adelante. El amor lo puede todo y la actitud positiva también.

I have nurofibromotosis

If you want to know where I get my IVCs I go to Riodan Clinic the people there are so nice people.

I am now a 13 year old girl who fights NF1 and I'm staying strong! God Bless you all!

I was diagnosed with NF 1 at the age of 2 months. None of my family had it so I was the unlucky one. And at age 8 I got a small Tumor by my right optic nerve and it was the scariest day of my life. If you have tumors and don't want to do chemo therapy do IVC treatment. I love and highly recommend it. For all who suffer NF God Bless You.

I have nf to I don't know is 1 or 2 or 3 From phil

My name is WELLIgTON I'm 37 years old I'm Brazilian and I live in Brazil, I'm also a carrier of neurofibromatosis, I've suffered a lot of prejudice.

Sir pls malayalam tell

Hi! I have a suggestion to liquefy neurofibromatosis lumps. Keep eating papaya fruit everyday, don't stop . Papaya liquefies cancer cells or tumors that is why it is used as meat tenderizer. Cancer cells /tumors don't have mechanism for repair or heal, it is just uncontrolled growth. Papaya don't affect healthy cells. My teacher had 3 breast lumps and they disappeared because she ate papaya for 3 months, she told us in class. If you don't believe me, google papaya cure cancer. I know its not cancer but it is tumor so is uncontrolled growth. They just might liquefy the lumps so they'll disappear. I hope you try, you have nothing to lose , just all the lumps. My goal is to spread this advice to as many people with neurofibromatosis as i can because it saddens me to look at them.

I have nf1 and I also have learning disabilities, cafe latte spots, sensory with my scalp and ears, and my spinal cord sticks out of my back

Hello, I am 19 and have nf1. I was diagnosed at the age of 17 with this. I don't have any major symptoms as of now but I have many tumours all over my hand stomach and neck. Handful of them are also on my back. These tumours are not visible to anyone with naked eye but if someone closely looks at the site he can spot it. The largest tumour is 2cm in size and roughly 50 in number.These tumours are under the skin ones. Some of them are painful when pressed but not everyday. I am very tensed to think how my future will look like as no one can predict the rate of growth of these. tumours. My mother also have nf1 but her is very mild she get to know about it at the age of 40. -Can my condition worsen in future? -Is meditation able to slow tumour growth or can cure nf1?

I was diagnosed at 19years old. I avoided Dr.s all my life up till then. I went into a bad asthma attack so went to hospital for breathing treatment. They always give a lung spray before one. That's when I was diagnosed. Had lung surgery. I'm 46 now, in alot of pain daily, problems see UK nv,ect. Past year I've had 30 from elbow down. Find a cure. Not that it would help but I'm donating my body to science

I have nf1 but I don't have scoliosis I am 27 my eye power is _2 ... but have some tumours on my hand ,back side , and chest but no tumors on my leg .. don't have usse for walking , running, and my bp is too Normal and hearing good .. I have a question nf 1 can causes blindness paralysis and causes cancer

Hello from Romania. I have NF1 too since I was born. It's very hard to try to stay strong and go on but that's life. But I want you to ask you, does someone with NF1 have healthy children? That didn't got it? I know the riscs. They are 50%-50% something like a russin roulette.

This is so sad….I have NF1 but it’s very mild and I don’t suffer many major symptoms😢 my heart goes out to you all going though hash and life threatening symptoms💗

I have NF1 also I appear to have it fairly mild right now but it is terrifying that we have a shorter life expectancy it makes me so sad I HATE NF1

Treatment please??

It runs in our family. My sister has it through spontaneous gene mutation, and my husband has it as well as one of my son's. My husband brother has it his mother, aunt, uncle's cousins and more so my son really doesn't feel different yet. I don't think he will. We knew that at least one would be born with it. He had cafe au lait spots at birth. The pediatrician came in to deliver the bad news and was surprised I already knew. Any Whoo he's living his life to the fullest he can. He's 23 and his so far looks to be minor where as my sister's is severe.

Eu sou do Brasil e tenho essa doença

I haven't seen condition in my start coming when I was in my 20s but still God's children

My Newrofribama problem madam please help me

hi I'm 24 an I have NF

I have nf 1 found out at 3 1/2

Tyler is my brother :( danielles son. He went through a severe meth addiction for 4 years because of pain and is doing very well now. He is 17 months in recovery

I have NF1 :)

The unknowing the risk then we'll never to give up in fight everyday to survive till the next I'm 34 two-and-a-half years old I was diagnosed

Someny people Alround the world i was thinkng were just me

I too have neurofibromatosis

I am 30 , I have NF1 and my dad and his dad had it , it sucks more socially

I have NF and have had 2 surgeries because of it.

No cure? It's hereditary? So as long as you aren't passing it on. No more kids would be born with it?

I have nf 1 found out at 3 1/2 was only meant to live to five now 20

Yo también tengo neurofibromatosis

I have nf1 I had the brown markes I was 17 when I found out I had nf1 but it was called vonreclin howson skin disease but now it is called nf which is better .

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💖💖💖💖💖💖💖💞💞💞💞💞💞✌✌✌✌✌

I have NF and i almost failed school because it’s harder for me to learn

I’m talking to a woman with NF1 and while we share photos, it seems like she doesn’t want to meet until we have some bond over the phone. She’s in her 30’s. I like her and wish she wouldn’t hide.