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Living with NF2

Share your story, find support and information, and discuss symptoms and management of neurofibromatosis type 2 (NF2).

Scientists, Doctors anf the like

By Brown-eyed-girl · New reply July 31, 2009
6 replies
Hi there just wondering why is it that the Doctors and everyone in "that" line of work can find medication or what ever to deal with every thing else but NOT NF1/NF2, i mean yeah i am happy that people ...

Surgeons for NF in England

By yvonnefoong · New reply July 24, 2009
3 replies
Hello everyone. i am a Malaysian student completing my bachelors degree in Psychology through Upper Iowa University's distance learning program. I am planning to pursue a PhD in Clinical Psychology after ...

Making a decision about surgery

By ttg · New reply July 15, 2009
13 replies
I have a daughter recently diagnosed with NF2. Currently she is asymptomatic but her bilateral tumors are 2.0 and 2.2. My question is to anyone out there, would you reccomend surgery or gamma knife? Has ...

NF and kidney stones

By Santel · New reply July 9, 2009
10 replies
I am wondering if kidney stones are a part of the NF baggage - have any of you had kidney stones ever? - if so what type NF do you have. My brother and I have had them all our lives - the only ones in ...

Wheel chair help?

By deafwolf_jim · New reply July 7, 2009
7 replies
I am in need of a used lightweight manual chair. Unfortunately medicare in their esteemed stupidity says since i can walk with forearm crutches in the house, I do not need one to go out and be in the ...

Please Advise

By Cardsfan · New reply July 7, 2009
1 reply
Hello, I am new to this site and I am wondering if anyone has every been diagnosed with NF2 and later developed cancerous tumors? I have NF2 and have had multiple surgeries and gamma knife procedure ...

Confirmed cases of NF1 and NF2

By Basenji53 · New reply July 3, 2009
6 replies
Has anyone been confirmed through genetic testing to have both NF1 and NF2? I have read several posts where people claim to have both. Is this confusion because people with NF2 can have cafe'-au-lait ...

Surgery Schedule for Thursday June 25th

By TioCoki · New reply June 23, 2009
6 replies
Hello Everyone! I am new in this site, here is my story; In 2005 I had an acustic nouroma removed from my right ear, lost my hearing on the right ear. I had an MRI done on 2008 to make sure that tumor ...

NF and Seizers

By peteadams · New reply June 9, 2009
16 replies
can people with NF have Seizers? Sometimes when I am sleepling, I feel I cant move or breathe. I might have to talk to my DR. But I am asking if anyone experiences the same thing ...

Awareness should start with us..

By an3ak · New reply June 5, 2009
1 reply
I am so blessed that the media here my country (Philippines) caught my story when I was raising funds for my supposed to be ABI but turned out I was a candidate for cochlear implant even though I have ...

NF2 was featured on "House" on April 27, 2009

By karan · New reply May 3, 2009
17 replies
Although my daughter is diagnosed with NF1, I was amazed to be watching "House" last night, and to hear them discussing a diagnosis of NF2. (Turns out, in the plot, the patient didn't have it.) It was ...

New here & having surgery this Tues. the 24th...i wanted to share my story.

By lisaloves · New reply April 19, 2009
15 replies
hi all. thought i'd write to make some "friends" that might have similar stories to me, relate to, etc... i'm a 31 year old female that lives in Santa Barbara, Ca. i've been living with NF1 or 2 ( i don't ...

New to Inspire

By RonnieB · New reply April 6, 2009
6 replies
Hi all I am new to inspire and I want to say I am happy to find a community of people who share the same genetic disorder I do. I will start by saying I battle NF 2 and some symptoms of NF 1 on a everyday ...

Ghostwriter passed away this morning...

By seesnow · New reply March 17, 2009
14 replies
Michael passed away this morning. I know no details at this time. His mom called me about 15 minutes ago and was in the ER. She said he had passed away about an hour earlier. She said she would call me ...

Hello

By msbarker2005 · New reply March 5, 2009
2 replies
Hi everyone, My name is Simone and I am 40 years old, I was diagnosed with NF2 when I was 21 and told by the time I was 31 I would be completely deaf, I needed to prepare to live in a world of silence ...

who can help

By jacinta · Posted February 19, 2009
0 replies
is there any doctors in sc that can help me. I have a husband who is having pain in the sterdum area and so far wew haven't come across any doctos that seem to know what nf is ...

Ghostwriter Update 1-3-09 We got our miracle! WOOHOO!

By seesnow · New reply February 9, 2009
3 replies
PRAISE GOD! We got our miracle today! Michael's mom and his sister were there with Michael today. His mom actually had an accident of some sort at work and ended up leaving early. She's fine and was with ...

What were your NF2 symptoms?

By nesting · New reply February 8, 2009
9 replies
I hope no one minds me posting here. My mother in law has NF2 as evidenced by her bilateral acoustic neuromas. We are in the process of figuring out if my husband is a carrier/has NF2 as well. It has ...

Saw a thred about tastes...how about odors?

By grannyj · New reply January 11, 2009
5 replies
Does anybody ever "smell" something odd when there is really nothing to smell? Its as if the odor comes from within my nose. Welcome any comments ...

Is there anybody out there with NF2?

By KAM111 · New reply January 11, 2009
9 replies
Hi...I have lived with NF2 for 4 years now. I was just wondering if there was anybody withen the ages 15-19 that have NF2? fill free to post here no matter what age or type of NF you have!!! KAM111 ...