Guest guest Posted June 3, 2012 Report Share Posted June 3, 2012 I find the FB page great for getting the word out... but alas, like some of the others... I don't really care ( please don't take this personally ) about what you are going to wear tomorrow, or what your dog is doing now. it is too open, with not moderation and boundaries. But there are people who are in great need of help!! .. Moderated, Seasoned, Tested, Valuable. If you do not use your email to respond to achalasia posts and instead post from the groups page.. you can see and experience a multitude of invaluable information. You can keyword any experience or name and they will all come up... for the last 13 years and thousands upon thousands of posts.. The database, files, photo's and links do not go away, they are there for you to use!! 13 years of worldwide input... Facebook could never compare. I am convinced the key.. albeit small, is contained in the experience of the membership.. it just needs to be unlocked. Facebook should be a segway for the multitudes who are seeking advice, support and information to this group. I have used this database so much in the last 8 years it is incredible... If you were to search my name you would see.. It has also given me the opportunity to share my own experiences which could never have been accomplished on FB with the same depth. FB is good ..... is invaluable.. Carolyn Holmes mom to Cameron myo'd and fundo'd in May 05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2012 Report Share Posted June 3, 2012 Would it be Facebook instead of ? I hope not. Facebook, I agree, is way too open and not private at all. If Facebook becomes the only option for communicating with this group, I'm afraid I will no longer be able to take part by either just reading everyone's posts and sometimes communicating. I'm not interested in letting the entire worlk no my problems and it will leave the group open to the possibility of all sorts of problems. For instance the potential of employers looking at our FB accounts, etc. Please don't go to FB with this group. I, personally, will be lost.  From: Carolyn H <wooleeacre@...> Subject: vs facebook... hmmm.. achalasia Date: Sunday, June 3, 2012, 3:19 PM  I find the FB page great for getting the word out... but alas, like some of the others... I don't really care ( please don't take this personally ) about what you are going to wear tomorrow, or what your dog is doing now. it is too open, with not moderation and boundaries. But there are people who are in great need of help!! .. Moderated, Seasoned, Tested, Valuable. If you do not use your email to respond to achalasia posts and instead post from the groups page.. you can see and experience a multitude of invaluable information. You can keyword any experience or name and they will all come up... for the last 13 years and thousands upon thousands of posts.. The database, files, photo's and links do not go away, they are there for you to use!! 13 years of worldwide input... Facebook could never compare. I am convinced the key.. albeit small, is contained in the experience of the membership.. it just needs to be unlocked. Facebook should be a segway for the multitudes who are seeking advice, support and information to this group. I have used this database so much in the last 8 years it is incredible... If you were to search my name you would see.. It has also given me the opportunity to share my own experiences which could never have been accomplished on FB with the same depth. FB is good ..... is invaluable.. Carolyn Holmes mom to Cameron myo'd and fundo'd in May 05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2012 Report Share Posted June 3, 2012 No way will I follow this group on Facebook. They are marketers and their users are their products. Dan ________________________________ From: Zaidenberg <smichele2@...> achalasia Sent: Sunday, June 3, 2012 6:34 PM Subject: Re: vs facebook... hmmm..  Would it be Facebook instead of ? I hope not. Facebook, I agree, is way too open and not private at all. If Facebook becomes the only option for communicating with this group, I'm afraid I will no longer be able to take part by either just reading everyone's posts and sometimes communicating. I'm not interested in letting the entire worlk no my problems and it will leave the group open to the possibility of all sorts of problems. For instance the potential of employers looking at our FB accounts, etc. Please don't go to FB with this group. I, personally, will be lost.  From: Carolyn H <wooleeacre@...> Subject: vs facebook... hmmm.. achalasia Date: Sunday, June 3, 2012, 3:19 PM  I find the FB page great for getting the word out... but alas, like some of the others... I don't really care ( please don't take this personally ) about what you are going to wear tomorrow, or what your dog is doing now. it is too open, with not moderation and boundaries. But there are people who are in great need of help!! .. Moderated, Seasoned, Tested, Valuable. If you do not use your email to respond to achalasia posts and instead post from the groups page.. you can see and experience a multitude of invaluable information. You can keyword any experience or name and they will all come up... for the last 13 years and thousands upon thousands of posts.. The database, files, photo's and links do not go away, they are there for you to use!! 13 years of worldwide input... Facebook could never compare. I am convinced the key.. albeit small, is contained in the experience of the membership.. it just needs to be unlocked. Facebook should be a segway for the multitudes who are seeking advice, support and information to this group. I have used this database so much in the last 8 years it is incredible... If you were to search my name you would see.. It has also given me the opportunity to share my own experiences which could never have been accomplished on FB with the same depth. FB is good ..... is invaluable.. Carolyn Holmes mom to Cameron myo'd and fundo'd in May 05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2012 Report Share Posted June 3, 2012 Big no to facebook really hate that site ________________________________ From: Hoffman <rp518dan@...> " achalasia " <achalasia > Sent: Monday, 4 June 2012 9:36 AM Subject: Re: vs facebook... hmmm..  No way will I follow this group on Facebook. They are marketers and their users are their products. Dan ________________________________ From: Zaidenberg <smichele2@...> achalasia Sent: Sunday, June 3, 2012 6:34 PM Subject: Re: vs facebook... hmmm..  Would it be Facebook instead of ? I hope not. Facebook, I agree, is way too open and not private at all. If Facebook becomes the only option for communicating with this group, I'm afraid I will no longer be able to take part by either just reading everyone's posts and sometimes communicating. I'm not interested in letting the entire worlk no my problems and it will leave the group open to the possibility of all sorts of problems. For instance the potential of employers looking at our FB accounts, etc. Please don't go to FB with this group. I, personally, will be lost.  From: Carolyn H <wooleeacre@...> Subject: vs facebook... hmmm.. achalasia Date: Sunday, June 3, 2012, 3:19 PM  I find the FB page great for getting the word out... but alas, like some of the others... I don't really care ( please don't take this personally ) about what you are going to wear tomorrow, or what your dog is doing now. it is too open, with not moderation and boundaries. But there are people who are in great need of help!! .. Moderated, Seasoned, Tested, Valuable. If you do not use your email to respond to achalasia posts and instead post from the groups page.. you can see and experience a multitude of invaluable information. You can keyword any experience or name and they will all come up... for the last 13 years and thousands upon thousands of posts.. The database, files, photo's and links do not go away, they are there for you to use!! 13 years of worldwide input... Facebook could never compare. I am convinced the key.. albeit small, is contained in the experience of the membership.. it just needs to be unlocked. Facebook should be a segway for the multitudes who are seeking advice, support and information to this group. I have used this database so much in the last 8 years it is incredible... If you were to search my name you would see.. It has also given me the opportunity to share my own experiences which could never have been accomplished on FB with the same depth. FB is good ..... is invaluable.. Carolyn Holmes mom to Cameron myo'd and fundo'd in May 05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2012 Report Share Posted June 3, 2012 Ditto! Sent from my iPod On Jun 3, 2012, at 17:34, Zaidenberg <smichele2@...> wrote: > Would it be Facebook instead of ? I hope not. Facebook, I agree, is way too open and not private at all. If Facebook becomes the only option for communicating with this group, I'm afraid I will no longer be able to take part by either just reading everyone's posts and sometimes communicating. I'm not interested in letting the entire worlk no my problems and it will leave the group open to the possibility of all sorts of problems. For instance the potential of employers looking at our FB accounts, etc. Please don't go to FB with this group. I, personally, will be lost. > > > > > > From: Carolyn H <wooleeacre@...> > Subject: vs facebook... hmmm.. > achalasia > Date: Sunday, June 3, 2012, 3:19 PM > > > > I find the FB page great for getting the word out... but alas, like some of the others... I don't really care ( please don't take this personally ) about what you are going to wear tomorrow, or what your dog is doing now. > > it is too open, with not moderation and boundaries. > > But there are people who are in great need of help!! > > .. > Moderated, Seasoned, Tested, Valuable. > > If you do not use your email to respond to achalasia posts and instead post from the groups page.. you can see and experience a multitude of invaluable information. You can keyword any experience or name and they will all come up... for the last 13 years and thousands upon thousands of posts.. > > The database, files, photo's and links do not go away, they are there for you to use!! > > 13 years of worldwide input... Facebook could never compare. > > I am convinced the key.. albeit small, is contained in the experience of the membership.. it just needs to be unlocked. > > Facebook should be a segway for the multitudes who are seeking advice, support and information to this group. > > I have used this database so much in the last 8 years it is incredible... If you were to search my name you would see.. It has also given me the opportunity to share my own experiences which could never have been accomplished on FB with the same depth. > > FB is good ..... is invaluable.. > > Carolyn Holmes > mom to Cameron > myo'd and fundo'd in May 05 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2012 Report Share Posted June 3, 2012 I think this group is great and is in the category of lifesaver as far as I'm concerned. But in trying to calculate the potential number of Facebook friends ... have a related/unrelated question that's been on my mind. How many people in the population actually have achalasia? How is that calculated? As I understand it the incidence is one per 100,000. But what does that mean? Does it mean that in any give year, one out of a 100,000 people will be diagnosed with achalasia (or can be expected to have an undiagnosed case)? Using a U.S. population of 300 million (rounding) that means there are 3,000 new cases year. If that's how it works, then there could be as many as 200,000 people (based on average life expectancy that excludes very young children)? Does that seem reasonable? Pat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2012 Report Share Posted June 3, 2012 I do not know the number, but a surgeon at Mayo told me they see quite few each month Coming from all over. One GI doc there told me he sees about 3 per month. Either way, there Are a bunch of us. How many on this list serve? From what states... countries......territories?????? Sent from my iPod On Jun 3, 2012, at 20:58, dcblogs administrator <dcblogs@...> wrote: > I think this group is great and is in the category of lifesaver as far as > I'm concerned. But in trying to calculate the potential number of Facebook > friends ... have a related/unrelated question that's been on my mind. > > How many people in the population actually have achalasia? How is that > calculated? > > As I understand it the incidence is one per 100,000. But what does that > mean? > > Does it mean that in any give year, one out of a 100,000 people will be > diagnosed with achalasia (or can be expected to have an undiagnosed case)? > Using a U.S. population of 300 million (rounding) that means there are > 3,000 new cases year. > > If that's how it works, then there could be as many as 200,000 people > (based on average life expectancy that excludes very young children)? Does > that seem reasonable? > > Pat > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2012 Report Share Posted June 3, 2012 Hi Pat,  Over the years we have come to accept the figure (most likely provided by Notan) that there are approximately 1 new diagnosed case of achalasia per 100,000 population, or as you put it, approximately 3,000 new cases in the U.S. annually. The count of 200,000 " eating challenged " individuals, for some reason, seems high to me though. I think you have to do some higher mathematics to determine the average age of diagnosis or the midpoint, and develop a " bell curve " around that age, then figure what the life expectancies are for each " standard deviation " from the top of the curve. I suspect that thru natural causes, other than achalasia, the number of achalasians dying each year keeps the total number of " active " sufferers well under the 200,000 (or 67 out of every 100,000 population) that you cited. Regardless, for whatever reason you are giving these estimates, it would be an interesting study to try to determine how many total achalasians there are.  ________________________________ From: dcblogs administrator <dcblogs@...> achalasia Sent: Sunday, June 3, 2012 9:58 PM Subject: Re: vs facebook... hmmm..  I think this group is great and is in the category of lifesaver as far as I'm concerned. But in trying to calculate the potential number of Facebook friends ... have a related/unrelated question that's been on my mind. How many people in the population actually have achalasia? How is that calculated? As I understand it the incidence is one per 100,000. But what does that mean? Does it mean that in any give year, one out of a 100,000 people will be diagnosed with achalasia (or can be expected to have an undiagnosed case)? Using a U.S. population of 300 million (rounding) that means there are 3,000 new cases year. If that's how it works, then there could be as many as 200,000 people (based on average life expectancy that excludes very young children)? Does that seem reasonable? Pat Quote Link to comment Share on other sites More sharing options...
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