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Neurofibromatosis ever heard of it? - March 3rd 2010, 06:13 PM

Has anyone here ever heard of Neurofibromatosis? (NF for short) does anyone here besides me have Neurofibromatosis?
For those o you who don’t know what Neurofibromatosis is here is some info on it and just a little FYI there are three types of Neurofibromatosis
Neurofibromatosis Type one (which I have) Neurofibromatosis Type two and Schwannomatosis

Here is the info on NF type one: 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.

P.S if you want to learn more or know more about NF go to www.ctf.org


I was born with a genetic disorder called neurofibromatosis, it causes tumors to grow in my body on nerves,my spine,and under my skin. I have a tumor in the thalamus region of my brain. I also have heartburn,hypothyroidism and secondary adrenal insufficiency these are under control with medication.
I also have hip dysplasia and scoliosis.




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Re: Neurofibromatosis ever heard of it? - March 3rd 2010, 08:26 PM

Hmm, while I don't have this myself, I have heard of it and know someone with it.
Thanks for posting this, as this isn't something many people know about.
x


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against every odd that is stacked against them.” — Nikita Gill
   
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Re: Neurofibromatosis ever heard of it? - March 4th 2010, 02:11 PM

I don't have this myself, but I have heard of NF. I can't say I have ever met anybody with it, either. I have briefly looked into it before, but I still know very little. I'll definitely take a look at it, it's something I would like to learn more about!
Thank you for posting this. Feel free to PM me if you ever need anything!
Marie.
   
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Re: Neurofibromatosis ever heard of it? - March 4th 2010, 05:07 PM

Quote:
Originally Posted by Rie View Post
I don't have this myself, but I have heard of NF. I can't say I have ever met anybody with it, either. I have briefly looked into it before, but I still know very little. I'll definitely take a look at it, it's something I would like to learn more about!
Thank you for posting this. Feel free to PM me if you ever need anything!
Marie.
i know my mom has a few books on NF if you would like to read them i would be more then happy to talk to my mom about sending them to you.
i appreciate you letting me know i can message you and i'm gld its something you want to learn more about, they have bracelets out that say solve the NF puzzle, i have loads, if you'd like one or if anyone here would like one i'd be more then happy to send them out


I was born with a genetic disorder called neurofibromatosis, it causes tumors to grow in my body on nerves,my spine,and under my skin. I have a tumor in the thalamus region of my brain. I also have heartburn,hypothyroidism and secondary adrenal insufficiency these are under control with medication.
I also have hip dysplasia and scoliosis.




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