Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Lori, somehow, I think this has come up before, but I must admit I can't find anything about it in the archives. I guess out founder archil0chus thought that it was the best scientific term, as in . . . http://www.bentham-science.org/old-sample/cdtia1-1/szczeklik/szczeklik-ms.ht m or http://www.blackwell-synergy.com/links/doi/10.1034/j.1398-9995.57.s72.14.x/f ull/ And of course, not to be confused with AIRD . . . . right . . . . ? -- Ken West Check the library . . . samters/links > From: " truelori " <lori@...> > Reply-samters > Date: Tue, 01 Feb 2005 00:09:59 -0000 > samters > Subject: AIAR > > > > Hey guys -- I just noticed (for the first time, could have been > there for a year for all I know!) the " AIAR " in our title. What > does that mean? > > Thanks > > Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 Yup! This is a disorder with too many names, but I felt that AIAR should be included in the title so that googling scientists would find us. It's been there for a while. I'm toying with the idea of adding Widal's name in somehow too, in case we're missing people that way. Thoughts? - Mike On Mon, 31 Jan 2005 21:41:37 -0500, Ken West <kenwest@...> wrote: > > Lori, somehow, I think this has come up before, but I must admit I can't > find anything about it in the archives. > > I guess out founder archil0chus thought that it was the best scientific > term, as in . . . > > http://www.bentham-science.org/old-sample/cdtia1-1/szczeklik/szczeklik-ms.ht > m > > or > > http://www.blackwell-synergy.com/links/doi/10.1034/j.1398-9995.57.s72.14.x/f > ull/ > > And of course, not to be confused with AIRD . . . . right . . . . ? > > -- > Ken West > Check the library . . . > samters/links > > > From: " truelori " <lori@...> > > Reply-samters > > Date: Tue, 01 Feb 2005 00:09:59 -0000 > > samters > > Subject: AIAR > > > > > > > > Hey guys -- I just noticed (for the first time, could have been > > there for a year for all I know!) the " AIAR " in our title. What > > does that mean? > > > > Thanks > > > > Lori > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2005 Report Share Posted January 31, 2005 that sounds great to me! Condouris wrote: Yup! This is a disorder with too many names, but I felt that AIAR should be included in the title so that googling scientists would find us. It's been there for a while. I'm toying with the idea of adding Widal's name in somehow too, in case we're missing people that way. Thoughts? - Mike On Mon, 31 Jan 2005 21:41:37 -0500, Ken West <kenwest@...> wrote: > > Lori, somehow, I think this has come up before, but I must admit I can't > find anything about it in the archives. > > I guess out founder archil0chus thought that it was the best scientific > term, as in . . . > > http://www.bentham-science.org/old-sample/cdtia1-1/szczeklik/szczeklik-ms.ht > m > > or > > http://www.blackwell-synergy.com/links/doi/10.1034/j.1398-9995.57.s72.14.x/f > ull/ > > And of course, not to be confused with AIRD . . . . right . . . .. ? > > -- > Ken West > Check the library . . . > samters/links > > > From: "truelori" <lori@...> > > Reply-samters > > Date: Tue, 01 Feb 2005 00:09:59 -0000 > > samters > > Subject: AIAR > > > > > > > > Hey guys -- I just noticed (for the first time, could have been > > there for a year for all I know!) the "AIAR" in our title. What > > does that mean? > > > > Thanks > > > > Lori > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 Guess I missed that it was called that though I've visited these links before. The term I know is what Dr. son calls it, which is " AERD, " or aspirin exacerbated respiratory disease. The " Samters Foundation " group seems to have gotten a little bit stuck on the naming of the group, and that's part of the reason I'm curious about this. I do think " exacerbated " rather than " induced " is an important distinction, because the point is not to avoid aspirin necessarily for everyone, and we have the symptoms without aspirin. But aspirin makes it a lot worse. Aspirin induced implies without aspirin you're symptom-free, which I think may be unfortunately what some doctors believe! I think the unfortunate point is no one knows this by the same name, and most doctors don't know it by ANY name or a description. I always just say " I have this syndrome or sort of disease, it's a triad. I'm allergic to aspirin, have severe recurrent nasal polyps and severe asthma. " They probably aren't listening when I say it, but that's what I say. It's crossing over a little bit into a discussion that died over in the other forum but I think it's important going forward as a community to decide what it should be called and when the foundation (calling it that for lack of a better term) moves into the greater world part of the education will be to make sure all doctors KNOW not only the name, but what the hell it is. To the best extent possible, that is. Oh well I'm rambling! Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 I'd vote for either " Samter's Triad " or " Aspirin Triad " as the official name. I'd prefer both over AERD or AIAR. Between the two, I'd say Samter's will be less of a misnomer and will be more easily searchable, if people can remember it. Whereas Aspirin Triad is easy to remember but a little misleading, since the aspirin sensitivity usually comes last in the order of symptoms. Thoughts? Care to vote on it? > > Guess I missed that it was called that though I've visited these > links before. The term I know is what Dr. son calls it, which > is " AERD, " or aspirin exacerbated respiratory disease. The " Samters > Foundation " group seems to have gotten a little bit stuck on the > naming of the group, and that's part of the reason I'm curious about > this. I do think " exacerbated " rather than " induced " is an > important distinction, because the point is not to avoid aspirin > necessarily for everyone, and we have the symptoms without aspirin. > But aspirin makes it a lot worse. Aspirin induced implies without > aspirin you're symptom-free, which I think may be unfortunately what > some doctors believe! > > I think the unfortunate point is no one knows this by the same name, > and most doctors don't know it by ANY name or a description. I > always just say " I have this syndrome or sort of disease, it's a > triad. I'm allergic to aspirin, have severe recurrent nasal polyps > and severe asthma. " They probably aren't listening when I say it, > but that's what I say. > > It's crossing over a little bit into a discussion that died over in > the other forum but I think it's important going forward as a > community to decide what it should be called and when the foundation > (calling it that for lack of a better term) moves into the greater > world part of the education will be to make sure all doctors KNOW > not only the name, but what the hell it is. To the best extent > possible, that is. > > Oh well I'm rambling! > > Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 I'd vote for either " Samter's Triad " or " Aspirin Triad " as the official name. I'd prefer both over AERD or AIAR. Between the two, I'd say Samter's will be less of a misnomer and will be more easily searchable, if people can remember it. Whereas Aspirin Triad is easy to remember but a little misleading, since the aspirin sensitivity usually comes last in the order of symptoms. Samter's seems to be a widely used term, and when Aspirin Triad is written it's almost always there parenthetically. When someone types aspirin triad, they'll always get a samter's result anyway. Plus there's the inertia involved in switching names to think of. Thoughts? Care to vote on it? > > Guess I missed that it was called that though I've visited these > links before. The term I know is what Dr. son calls it, which > is " AERD, " or aspirin exacerbated respiratory disease. The " Samters > Foundation " group seems to have gotten a little bit stuck on the > naming of the group, and that's part of the reason I'm curious about > this. I do think " exacerbated " rather than " induced " is an > important distinction, because the point is not to avoid aspirin > necessarily for everyone, and we have the symptoms without aspirin. > But aspirin makes it a lot worse. Aspirin induced implies without > aspirin you're symptom-free, which I think may be unfortunately what > some doctors believe! > > I think the unfortunate point is no one knows this by the same name, > and most doctors don't know it by ANY name or a description. I > always just say " I have this syndrome or sort of disease, it's a > triad. I'm allergic to aspirin, have severe recurrent nasal polyps > and severe asthma. " They probably aren't listening when I say it, > but that's what I say. > > It's crossing over a little bit into a discussion that died over in > the other forum but I think it's important going forward as a > community to decide what it should be called and when the foundation > (calling it that for lack of a better term) moves into the greater > world part of the education will be to make sure all doctors KNOW > not only the name, but what the hell it is. To the best extent > possible, that is. > > Oh well I'm rambling! > > Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2005 Report Share Posted February 1, 2005 I vote for AERD. I like the idea of a very descriptive name that is quite specific. I think that the information doctors are given about our condition does need to change, and that naming it something like AERD could help to create such change. I also think that whatever name we use we must obviously include in any information we give out the other known names of our condition--so that people don't get confused about it being a whole other condition. I also think a general vote on a name for it would be great. We may also want to ask doctor's such as son, what he thinks we should call it for the sake of this group and/or just for a foundation (or whatever it is that we chose to create). truelori wrote: Guess I missed that it was called that though I've visited these links before. The term I know is what Dr. son calls it, which is "AERD," or aspirin exacerbated respiratory disease. The "Samters Foundation" group seems to have gotten a little bit stuck on the naming of the group, and that's part of the reason I'm curious about this. I do think "exacerbated" rather than "induced" is an important distinction, because the point is not to avoid aspirin necessarily for everyone, and we have the symptoms without aspirin. But aspirin makes it a lot worse. Aspirin induced implies without aspirin you're symptom-free, which I think may be unfortunately what some doctors believe! I think the unfortunate point is no one knows this by the same name, and most doctors don't know it by ANY name or a description. I always just say "I have this syndrome or sort of disease, it's a triad. I'm allergic to aspirin, have severe recurrent nasal polyps and severe asthma." They probably aren't listening when I say it, but that's what I say. It's crossing over a little bit into a discussion that died over in the other forum but I think it's important going forward as a community to decide what it should be called and when the foundation (calling it that for lack of a better term) moves into the greater world part of the education will be to make sure all doctors KNOW not only the name, but what the hell it is. To the best extent possible, that is. Oh well I'm rambling! Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2005 Report Share Posted February 2, 2005 Are you talking about voting on the name of the Samters foundation or on the name of this group here? If it's the foundation you'll have to come join that group to have a vote on that! We had last had something that included both Samter's and had " Aspirin Exacerbated Respiratory Disease " in the " tagline. " We probably aren't going to call it a foundation anyway but we haven't decided on something else -- anyway ... Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2005 Report Share Posted February 2, 2005 There's no way I could know this for sure but I'm pretty sure Dr. son himself would " vote " for AERD (or the long version of it). It's a side story but a couple of years ago I was trying to get Samters listed with some other organizations such as the rare disease database and through another person I got an e-mail from Dr. son (not written to me) that was a bit snippy and " corrected " the person and said that Samters is no longer called Samters, it is called AERD. He said that's what it's known as now in the medical community. I love Dr. son but I'm not sure what he meant by the medical community -- I think he meant himself and a small group of other people doing research on this. But I don't know. Lori Quote Link to comment Share on other sites More sharing options...
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