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Neurofibromatosis Message Board
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Old 03-11-2001, 03:31 PM   #1
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Post Neurofibromatosis

How many board user's have the genetic birth deffect called Neurofibromatosis ?

I was born with this and have thousands of tumors.

I am in severe pain all the time and rely on Demerol for pain controll.

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Old 04-03-2001, 05:04 PM   #2
Join Date: Apr 2001
Location: Jonesborough, TN USA
Posts: 3
sessinclair HB User

I have one son that has a mild case of nf1, but it is hard to find a doctor to treat this, in our area anyway. He has severe headachs, and alot a pain in his legs. i have been searching these boards and the web for information on this, and have received several e-mails from wonderful people who have helped me alot understand neurofibromatosis. god bless you and i pray you can find a doctor to get you out of pain

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Old 04-03-2001, 05:09 PM   #3
Join Date: Apr 2001
Location: Jonesborough, TN USA
Posts: 3
sessinclair HB User

I have a seven year old son with a mild case of Neurofibromatosis, he has severe headaches and leg pain. it is hard to find out any information in our area since most doctors haven't seen this. i have searched the web sites and have learned a lot and several wonderful people have sent me e-mails with very good information. God bless you and I pray you can find something to help with your pain.

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Old 08-12-2003, 01:04 PM   #4
Join Date: Aug 2003
Posts: 9
CalGal2003 HB User

For those of you with NF1 and or NF2 there is a great site. [url=""][/url] There is also na area on the site to find support in your area. Good Luck . Hope this helps 1 or more of you.

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