Neurofibromatosis NF

Neurofibromatosis, also known as NF is a rare genetic disorder that can affect anyone. It causes tumors to form in the brain, spinal cord, and nerves. Basically anywhere there is a nerve in the body a tumor can grow and the tumors can cause all sorts of issues if they grow on some nerves or in some places. There are 3 types of NF and there is no cure at this time.

I will write some posts about NF in relation to our personal lives but this page is our main page for us to share links for you to get more information about NF and it is my hope that it will help bring about more common awareness and maybe encourage you to help find a cure or at least know that people with NF are not such an oddity as the media has made it seem sometimes. I’m referring to how they show mostly people with extreme or massive tumors and growths and make it seem like this is something that is absolutely hideous and ugly. That is not the norm for NF that I have seen and that stigma I think makes many NF suffers feel ashamed or like they belong in a freakshow. Here are a few links for you to learn about NF (links open in a new window):

General NF info:

http://www.ninds.nih.gov/disorders/neurofibromatosis/detail_neurofibromatosis.htm

Specific to children:

http://www.ctf.org/Learn-About-NF/What-Is-NF.html

 

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