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Neurofibromatosis Message Board


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Old 02-06-2005, 03:24 AM   #1
Join Date: Mar 2004
Posts: 54
Bekki HB User
Question "Neurofibromatosis"

Hey all, sorry I wasn't sure which board to put this in..
I recently found out that someone I knew has Neuro-fibroma-tosis, and was wondering all about it. I have found a few resources on the net, but not all are very helpful.


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Old 02-17-2005, 06:34 AM   #2
Junior Member
Join Date: Nov 2004
Location: CT
Posts: 32
Njank HB User
Re: "Neurofibromatosis"

Hi Bekki
I have NF. It is a disorder that causes tumors to grown on the body on nverve endings. The person also has Cafe Au Laits ..which are just brown splotches on the body.
Sometimes the tumors can be left alone and no reason to remove there. Other times you have no choice. Ive had 3 removed. One from my back, neck and brain. Sometimes peopel get nothign but CALS but other times it is a lot worse. It is 50% inherited and the other 50% is Sponatneous Mutation. That would be me. A great website is
they have great info and describe the 2 types of NF. There is Nf1 and NF2.
It is worth checking out.
hope this helps a bit.
Nancy - Connecticut

Old 02-18-2005, 07:13 AM   #3
Join Date: Feb 2005
Posts: 3
Re: "Neurofibromatosis"

My son and I both have NF he inherited it from me and I inherited it from my mom.
We have the Cafe Au Laits ( Brown Splotches) we have freckles underneath our arms.
We have the NF1. My son is 9 years old and I get him checked every year at the NF Clinic at the Childrens Hospital in St. Louis. to see if any Tumors have developed anywhere. We both get our eyes and ears checked yearly to make sure our Vision and Hearing is O. K. and that no Tumers have Developed on our nerve endings. [url][/url] is a great web site to check out.


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