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Re: Neurofibromatosis 1

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Old 11-21-2007, 03:37 PM   #1
Join Date: Nov 2007
Location: New York
Posts: 1
joeysmom123 HB User
Re: Neurofibromatosis 1

My son has also just been diagnosed with NF and I"m very scared, I'm also petrified of what will pop up and have read many scary stories online..

Last edited by moderator2; 11-21-2007 at 06:06 PM.

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Old 02-22-2008, 07:52 PM   #2
Join Date: Feb 2008
Location: Boston
Posts: 2
wid HB User
Re: Neurofibromatosis 1

Hi. I was diagnosed with NF1 about ten years ago, when I was like, 6. Any specific questions you have, I'd be happy to try and answer.

Old 02-27-2008, 12:15 PM   #3
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Join Date: Dec 2006
Location: Midwest
Posts: 140
beachlovr HB User
Re: Neurofibromatosis 1

My son goes in to be tested for NF in early March. He is 6 years old. What were your symptoms before you were finally diagnosed? How many cafe au lait spots did you have when you were diagnosed versus how many you have now? Do you feel this disease hinders you in any way?

I am hoping that he does not have it, but if he does, I would appreciate asking you some more specific questions if we do find out from the doctor that he has NF. Please check back here in a few weeks as I will post what I find out from the doctor.


Old 03-20-2008, 06:21 PM   #4
Join Date: Feb 2008
Location: Boston
Posts: 2
wid HB User
Re: Neurofibromatosis 1


When I was diagnosed, it was based upon cafe au lait spots, probabaly about ten, but I'm not entirely sure, as they are all gone now. There was also a neurofibroma on my optic nerve of my left eye. After I was examined and an MRI of my head was done, neurofibromas were found.

In my every day life, I can't say that the NF affects me too much. The neufibroma on my eye has given me what most people understand as a "lazy eye", which means that occasionally, especially when I am tired, it wanders to the side, but eye exercises have helped to help me to make that happen less often.

The neurofibromas are tender, but the pain is not very bad. If one in particular is painful more often, removal is usually very easy, depending on the nerve involvement.

It has not had an effect on my ability to perform in school or in sports.

If you have any more questions, or if your son does, let me know. I am still very much in touch with a child's perspective.


No one else in my family has had NF, so if your son is the first, know that you are not the only confused one.

Last edited by wid; 03-20-2008 at 06:22 PM.

Old 03-26-2008, 09:02 PM   #5
Join Date: Mar 2008
Location: erie
Posts: 3
jejejenna0045 HB User
Re: Neurofibromatosis 1

hi i am 18yrs old and have NF and have had it since i can ever remember, i am not sure when i was actually diagnosed but i have numerous cafe au lait spots, it makes me really self conscious and always have...and i dont know how to accept the fact that i have them, they make me hate the way my body looks, is there any treatments that i can remove the spots. esp the ones on my legs.

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