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anyone else with this "neurofibromatosis"

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Old 12-13-2004, 07:09 PM   #1
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ajas HB User
anyone else with this "neurofibromatosis"

Hi ,I have a friend /workmate who has neurofibromatosis, and have just mentioned this discovery of health boards to her, she has asked me to see if there is anyone out there who is like her, apparently its very rare , so if anyone can help I will give her the site to go etc, as feel she would benefit immensly just by talking to others.

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Old 12-14-2004, 11:49 AM   #2
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Timber HB UserTimber HB User
Re: anyone else with this "neurofibromatosis"

I dated a guy for a couple of years who had NF. If you have any questions, I'll try to help.

Last edited by Timber; 12-14-2004 at 10:20 PM.

Old 12-15-2004, 08:25 AM   #3
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kitkat77 HB User
Re: anyone else with this "neurofibromatosis"

My girlfriend's son who is 6 years old has it and she also had a coworker who has it. NF is not as rare as it used to be and there are alot more support groups out there than you would think! [REMOVED]

Last edited by Moderator BAC; 12-15-2004 at 01:15 PM. Reason: Do not instruct others on off board searches. Thank you!

Old 12-15-2004, 12:51 PM   #4
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spyrogirlkim HB User
Re: anyone else with this "neurofibromatosis"

I have neurofibromatosis.

Old 12-15-2004, 07:57 PM   #5
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ajas HB User
Re: anyone else with this "neurofibromatosis"

Thanks for the replies I will definetly get her on to this board, she is looking at lasertreatment to blast the latest 2 lumps rather than go thru surgery again and again etc.
hope you are keeping well.

Old 01-25-2005, 09:30 AM   #6
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Applekisses HB User
Re: anyone else with this "neurofibromatosis"

Hi i have nf and so does my 9mth old daughter just curious as to see how many of us there is on here and how badly we suffer from it

im quite lucky i only have the cafe au latte marks and so does my daughter my mom has it and has the tumors where as my two aunts have had to have their leg ambertated (sp?) through it!

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