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KittyCat2010 Offline
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Exclamation does anyone on her have Neurofibromatosis - July 16th 2009, 10:47 PM

Neurofibromatosis( NF for short) is a genetic disorder that causes non-cancerous tumors to grow under the skin and on the nerves i have had it since i was 3 months old and i was curious to know if anyone else on ere had NF i have NF Type 1 there is NF type one NF Type two and Schwannomatosis if you want to read more or make sure its legit(sometimes people think its fake) google it or go to www.ctf.org
heres some quick info about all three

Neurofibromatosis 1 (NF1): also known as von Recklinghausen NF or Peripheral NF. Occurring in 1:3,000 births, web characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF also have learning disabilities.

Neurofibromatosis 2 (NF2): also known as Bilateral Acoustic NF (BAN), is much rarer occurring in 1:25,000 births. NF2 is characterized by multiple tumors on the cranial and spinal nerves, and by other lesions of the brain and spinal cord. Tumors affecting both of the auditory nerves are the hallmark. Hearing loss beginning in the teens or early twenties is generally the first symptom.

Schwannomatosis: a rare form of NF that has only recently been recognized and appears to affect around 1:40,000 individuals. It is less well understood than NF1 and NF2, and features may vary greatly between patients.
   
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eunoia Offline
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Re: does anyone on her have Neurofibromatosis - July 18th 2009, 06:50 PM

Hey there, Ashley.

I don't have Neurofibromatosis and I don't know any who does. It must be pretty hard on you when people think it's fake, though. I know that when people disbelieve me I tend to feel as if my feelings aren't legitimate, and that's never a good feeling.

Who do you have to talk to about what you're going through? Connecting with other people can be a very helpful thing. I've also found it to be sort of "grounding" and comforting, in a lot of ways. I guess we all want to be understood, right? It feels good to share something with another person. Have you ever looked into local groups or anything? While that's certainly not something you have to do, it's an option. =)

I know I probably can't understand, fully, what you're going through, but I do want you to know that I'm here to talk if you ever need someone to listen. You can always feel free to private message (PM) me or visitor message (VM) me for a chat or anything at all, really.



Someday I will be strong enough to lift not one but both of us.
I told you to be patient
I told you to be fine
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KittyCat2010 Offline
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Re: does anyone on her have Neurofibromatosis - July 18th 2009, 10:51 PM

thank you Jessie, i do know some people with NF but none of the girls that i am friends with who have NF live near me, they all live in different states.
we dont really have any groups here for NF the one thing we only have that we really can use to communicate is our bulliten board, and everyone on there is much older then i am but its still nice.

anyone who is willing to try to understand is a friend to me, i appreciate you reaching out to me, i will deffinetly PM you sometime
i appreciate you talking to me,


PHILIPPIANS 2:15
Then you will be innocent and without any wrong. You will be Gods children without fault. But you are living with crooked and mean people all around you, among whom you shine like stars in the dark world.
   
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eunoia Offline
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Re: does anyone on her have Neurofibromatosis - July 19th 2009, 04:29 AM

You are certainly welcome. =)

It's hard to live so far from people you relate to. I'm glad you have the bulletin board, though. And although everyone on there older, you can actually learn from that if you choose to. Not to say that because you are younger you are less intelligent or anything, but that these other, older people have been through similar experiences and can, maybe, help you through them, too.

I look forward to hearing from you. =) Take care!



Someday I will be strong enough to lift not one but both of us.
I told you to be patient
I told you to be fine
I told you to be balanced
I told you to be kind
   
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