Guest guest Posted December 9, 1999 Report Share Posted December 9, 1999 June, Your 2 cents are counterfeit! You've got your statistics wrong. You are saying the rate is 40%, when in actual reality it is more like 0.0025%. There is no disease that affects people at a rate of 40/100. Except maybe good looks! > From: ManelyCat@... > > Sorry Mark, > > But I don't consider 40 out of 100 or 400 out of 1000 to be that rare. I > think there's something screwy with that statistic. Maybe they're including > all types of NF? > > ALTHOUGH, I have met very many NF2ers here on the site. I kind of feel like > I'm at home here. ) Maybe there are a heck of a lot more of us than I > thought! > > Is there some kind of directory in print, not on the computer, of all the > members of the NF2 Crew? And who would have that? > > My 2 cents...June > ------------------------------------------------------------------------ > See what's happening for NF2Con 2000! > http://www.home.earthlink.net/~earldillon/nf2convegas2000.html > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 In a message dated 12/08/1999 8:07:27 PM Pacific Standard Time, ffusca@... writes: << June, I am the only one in my family with NF2. >> Ditto---TR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 1999 Report Share Posted December 10, 1999 Tony, I wonder if you would complete the radiosurgery questionnaire I sent out? Most of the replies I have received have to do with gamma knife, and your results would help add to the info. If you need another copy, let me know. Marie Re: Gentic Counseling >From: TonyRomero@... > >In a message dated 12/08/1999 8:07:27 PM Pacific Standard Time, >ffusca@... writes: > ><< June, > > I am the only one in my family with NF2. > >> >Ditto---TR >------------------------------------------------------------------------ >See what's happening for NF2Con 2000! >http://www.home.earthlink.net/~earldillon/nf2convegas2000.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 1999 Report Share Posted December 11, 1999 , Maybe the 2 cents are a bit rough around the edges but they are certainly not counterfeit! I guess you got 0.0025% from 1 in 40,000. I think what she was trying to say is that a lot of people have ANs (ie, unilateral ANs) but never find out. They live their entire life without any problems. The AN must be too small to cause a problem. The ANs are only discovered when the person dies. I think the 40% number quoted is really closer to 1% (the number I read). All this makes sense to me since tumors grow natually in people. It's the tumor supressor gene that keeps the tumor from growing too large. In our case, the tumors continue to grow because we are missing the gene to halt or slow down the growth. This is how I see it anyway. > > >June, > >Your 2 cents are counterfeit! You've got your statistics wrong. You are >saying the rate is 40%, when in actual reality it is more like 0.0025%. >There is no disease that affects people at a rate of 40/100. Except maybe >good looks! > > > >> From: ManelyCat@... >> >> Sorry Mark, >> >> But I don't consider 40 out of 100 or 400 out of 1000 to be that rare. I >> think there's something screwy with that statistic. Maybe they're >including >> all types of NF? >> >> ALTHOUGH, I have met very many NF2ers here on the site. I kind of feel >like >> I'm at home here. ) Maybe there are a heck of a lot more of us than I >> thought! >> >> Is there some kind of directory in print, not on the computer, of all the >> members of the NF2 Crew? And who would have that? >> >> My 2 cents...June >> ------------------------------------------------------------------------ >> See what's happening for NF2Con 2000! >> http://www.home.earthlink.net/~earldillon/nf2convegas2000.html >> >------------------------------------------------------------------------ >See what's happening for NF2Con 2000! >http://www.home.earthlink.net/~earldillon/nf2convegas2000.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 1999 Report Share Posted December 11, 1999 sorry for the delay... i'm also the first one in my family netta Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 1999 Report Share Posted December 19, 1999 i am the only one in my family with NF2. TARA On Tue, 07 Dec 1999 03:44:59 -0500 Blue Eyes writes: > > >ManelyCat@... wrote: >> >> From: ManelyCat@... >> >> Well, I thought you might like to know that EVERY one of the replies >to my >> question that asked if you were the first in your family diagnosed >with NF2, >> was YES! Including myself, I've only had 9 people who responded. >> >> Anyone else care to respond? Are there any " generation " people out >there who >> have NF2 passed down from generation to generation? >> >> June >> >------------------------------------------------------------------------ >> See what's happening for NF2Con 2000! >> http://www.home.earthlink.net/~earldillon/nf2convegas2000.html >Generation to generation, my husband his mother grandmother and great >grandmother. We don't know further than that. > >------------------------------------------------------------------------ >See what's happening for NF2Con 2000! >http://www.home.earthlink.net/~earldillon/nf2convegas2000.html ___________________________________________________________________ Why pay more to get Web access? Try Juno for FREE -- then it's just $9.95/month if you act NOW! Get your free software today: http://dl.www.juno.com/dynoget/tagj. Quote Link to comment Share on other sites More sharing options...
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