Does anyone know any famous people with neurofibromatosis?

Guest over a year ago

Hi I'm i have nf I'm 36 I'm not what type I do have ofthem cause pain dont have s doc of not having incurnces or money to see one I in tenn. But from Wv if u email me or TeX and give me some info or Facebook I love to find out more thank you Burnee is my name

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Biju over a year ago

Hi
I am 46 Years Old. I have NF 1 from birth. My Mother Had it too. I was recently operated for a pilocytic astrocytoma , a benign brain tumour. I have multiple fibromas on my body that slowly develop with age.

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Guest over a year ago

WHAT IS YOUR SUPPORT GROUP? I HAVE HAD NF ALL MY LIFE. GET SICK OF THE COMMENTS FROM PEOPLE LIKE (HEY FROG FACE, WHAT BIT YOU UP, ARE YOU SICK OR SOMETHING, HI THERE LIZZARD SKIN, SO ON AND SO ON.

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Guest over a year ago

I know your pain, 41 and getting harder to hide it

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Guest over a year ago

You make it sound like if you have NF, you can't do things like be in movies. NF1 is a genetic disorder, not something where you are unable be a human. A person with NF has just as much of a chance of being in movies than someone who does not have NF. And BTW I was in one movie and I have NF1.....Image the luck.(sarcasm)

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Guest over a year ago

I nrrf all information on nf bc cys font think having nf need alot of care. Non dies judge. My Ex took. My kidsfor reasons. But he nor judge. Or Cys ca=e bout nf

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Guest over a year ago

Hi!Am a Nigerian with NF type1 my right eye is affected and my right leg.Also I have the spot all over my body.But the growth on my leg was removed about 12 years ago.

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Guest over a year ago

I was born with it but diagnose when I was 9yrs old.Am a Nigerian, single and a class room teacher

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Guest over a year ago

You're an as****e. I as well have NF; no one is ugly. But your a b***h.
And it's 2017 you can have the gene removed before the baby is born.

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Guest over a year ago

my son is 37 years old now, he was dx w/ NF1 at age 7. He has had several surgeries and is facing several more. He is a strong believer and trusts God. He has insurance, but it is not any good. He will be having tumors removed again for the 4th time from his right arm. Does any on receive Social security benefits.

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Guest over a year ago

hey i am almost 28 years old and i have NF1 and, i hurt all the time, and it sucks. i have a tumor that has attract my main nerve (spine) yes people with NF can get social security, but its a pain in the butt to get it..im still fighting for it..

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Guest over a year ago

What movies u been in

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Guest over a year ago

Hey Jill,
Sorry to hear about your sister. It is a really hard thing to deal with at times. I was diagnosed with it at age 9 amd also have many of the side effects of it including sever scoliosis that i had to get corrected at age 15.
There are days that are hard and painful but i can also live a pretty normal life. I am now 30 and i am a mom of a beautiful little 3 year old girl who unfortunately also has nf and has 3 tumors at the bottom of her foot. But she is the happiest sweetest kid and she is meeting all her milestones. Living with nf is hard at times there are good days and bad but we havent let it stop us from doing anything.
One thing that really helped me was wheb i was a kid going to constant drs appointments and tests my mom would always try to make a fun day out of it and we would go for lunch and to the candy store and as much as i didnt really look forward to the appointment itself i would really look forward to the rest of the day and i have many fond moments of those times.
I wish your sister good luck and good health in her journey.

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Guest over a year ago

I wouldn’t usually do something like this but I’m 15 and I have NF1 inside my right cheek. I would say around about 7-8 I was aware I had the condition and my life has been no different, I’ve managed to play football for 6 years but quit recently as I want to focus on my GCSE’s and become a lawyer in the future, possibly go Cambridge if my grades are still up to a high standard. Sadly, if I ever wanted MY tumour removing I would have a risk of the whole of my right face completely dropping so I decided I would not take that risk. I am not sure how much help this post would be but I want your daughter to know that she can be anything she wants to be and not let anything get in her way.

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Guest over a year ago

I am doing a fundraiser for NF2 and Brain Cancer. My son died July 1st 2017 and I am doing a miniature golf tournament and was wondering if anyone can help me with it? It's in Hamilton Ontario Canada my son gave his body to science and the only thing I can do is keep his name going since he was so selfish the least I can do is raise money too find cure for NF2.

Thank You

Karen

_[removed]_

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