Question:
OK the original IgAN Foundation Web Site is back up.. A new address is www.iganfoundation.org … Thanks to all those who missed it. Russ – Hide quoted text — Show quoted text -> The original IgAN help group was www.igan.org hosted by > Russ George. > It is now proposed that the very valuable information on > that website is published once again, so that IgAN > sufferers have a resource they can trust once again. > please note we have no connection with igan.org this > is a public information service. > Much of the information here is direct from www.igan.org website > you will NOT find this valuable information at igan.ca, > because it has been censored by a misfit who left > the real IgAN support group in a sulk and decided to deceive us > with his own website full of misinformation. > Check it out yourselves and compare notes. > Most of the email addresses and links appear out of date > One day we hope Igan.Org will rise Phoenix like from the ashes > and Russ George again in the forefront of IgAN support.
Response:
On 27 Apr 2004 14:25:40 -0700, r-geo…@pacbell.net (Russ) wrote: >OK the original IgAN Foundation Web Site is back up.. A new address is >www.iganfoundation.org … Thanks to all those who missed it. >Russ
Thanks for coming back Russ. You state in the "what’s new" section >April 2004 >After a long time with this web site being unavailable we have decided to post it again. >There have been countless emails asking us to do this as the rest of the information >on the Internet on this condition still seems to be lacking the point of view we support here. >Hopefully we will find the renewed energy and enthusiasm to continue this effort. > Anyone who wishes to help please think about what you can do to help and let us know.
The best thing you can do for starters is to keep the site up. The information is as valid today as it has ever been. If you never did anything to it again it will always remain informative, helpful and an impartial insight into this disease. Good luck Russ, hope you are doing well and we’ll see you on the other side. lol PS: Any chance getting the list up again so we can meet all our old chums? – Hide quoted text — Show quoted text ->> The original IgAN help group was www.igan.org hosted by >> Russ George. >> It is now proposed that the very valuable information on >> that website is published once again, so that IgAN >> sufferers have a resource they can trust once again. >> please note we have no connection with igan.org this >> is a public information service. >> Much of the information here is direct from www.igan.org website >> you will NOT find this valuable information at igan.ca, >> because it has been censored by a misfit who left >> the real IgAN support group in a sulk and decided to deceive us >> with his own website full of misinformation. >> Check it out yourselves and compare notes. >> Most of the email addresses and links appear out of date >> One day we hope Igan.Org will rise Phoenix like from the ashes >> and Russ George again in the forefront of IgAN support.
""""""""""""""""""""""""""""""""""""""""""""""""""" It would seem we need to BEWARE who we seek advice from. WWW.IGAN.CA is an heavily censored site, this includes the listserv iga-nephropathy @yahoogroups.com. It is also run for financial reward, the profits of which solely support it’s founder and host Pierre. The original IgAN help group was www.igan.org hosted by Russ George. It is now proposed that the very valuable information on that website is published once again, so that IgAN sufferers have a resource they can trust once again. please note we have no connection with igan.org this is a public information service. Much of the information here is direct from www.igan.org website you will NOT find this valuable information at igan.ca, because it has been censored by a misfit who left the real IgAN support group in a sulk and decided to deceive us with his own website full of misinformation. Check it out yourselves and compare notes. Most of the email addresses and links appear out of date One day we hope Igan.Org will rise Phoenix like from the ashes and Russ George again in the forefront of IgAN support.
Response:
The orginal IgAN Foundation site is back.. with a new address www.iganfoundation.org Thanks to all who asked for it to return. Russ
Response:
On 27 Apr 2004 14:28:16 -0700, r-geo…@pacbell.net (Russ) wrote: >The orginal IgAN Foundation site is back.. with a new address >www.iganfoundation.org >Thanks to all who asked for it to return. >Russ
Yahooooooooooooooooooooooooooo. Excellent, brilliant, wicked. Thanks Russ and don’t you ever leave us again you some….. LOL I’m sure we’ll spread the word. Nice to have you back. """"""""""""""""""""""""""""""""""""""""""""""""""" It would seem we need to BEWARE who we seek advice from. WWW.IGAN.CA is an heavily censored site, this includes the listserv iga-nephropathy @yahoogroups.com. It is also run for financial reward, the profits of which solely support it’s founder and host Pierre. The original IgAN help group was www.igan.org hosted by Russ George. It is now proposed that the very valuable information on that website is published once again, so that IgAN sufferers have a resource they can trust once again. please note we have no connection with igan.org this is a public information service. Much of the information here is direct from www.igan.org website you will NOT find this valuable information at igan.ca, because it has been censored by a misfit who left the real IgAN support group in a sulk and decided to deceive us with his own website full of misinformation. Check it out yourselves and compare notes. Most of the email addresses and links appear out of date One day we hope Igan.Org will rise Phoenix like from the ashes and Russ George again in the forefront of IgAN support.
Response:
Are you a nutcase or something? IGAN.ORG has not had a single posting for years. In fact, a few months ago, when I went there, it was nothing but an advertising site — obviously taken as a replacement for the URL’s original use. If you want to work with a dead site that has no members, then go right ahead. The rest of the world will work with an active site. Again — you’re the one with the problem here, not the moderators or members of the other site. "IgAN" <nomailfacil…@1230.net> wrote in message
news:mu4f70t4vgsr6c0u9v6mpfvhct72ts47rl@4ax.com… – Hide quoted text — Show quoted text -> On Sat, 10 Apr 2004 03:49:42 GMT, "Walter Crosby" > <wcrosby…@earthlink.net> wrote: > >The posting below is an outrageous lie > I think we can make our own mind up about that by simply comparing > available information on the old IgAN.org site and yours! seems > strange yours lacks quite a bit? > > by someone that is upset that > >postings regarding untested and unproven treatments would not be allowed by > >the Yahoo group moderators. I know, because I was the moderator that would > >not allow the posting. > One posting? there would appear to be ZERO! posting on your group > showing alternative views to yours! considering all treatments in IgAN > are unproven as it is a relatively new disease in medical terms, and > that the majority of medicine available todays is from unproven > sources and alternative therapies makes your one sided view a little > obvious and clearly shows why we need to beware of censorship on the > net. > People like you are in grave danger of making a mockery of all the > internet stands for. Freedom to access information from all sources. > If you have a group with a claimed membership of thousands then it’s > obvious we need to protect those people. If it’s so innocent, why not > inform people before signing up the views are yours and yours alone? > >To hide behind this anonymous posting and make it sound like the Yahoo Group > >is doing something wrong is outrageous and a disservice to the thousands of > >people that get help everyday from igan.ca and the Yahoo Group. > No it’s exposing you for what you are, why would the truth hurt you? > >If you want to believe the paranoid rantings of a person that doesn’t have > >the guts to put their name on their posting, then go right ahead. > It’s easy to compare the information from your group, or rather lack > of it, to whats available on the net and Igan.org, we can clearly see > there are gaping holes in available current information missing on > your site, why would you suppress current thinking? > >Myself, I > >prefer information that can be trusted — something I have been getting > >since December 2000 from the Yahoo group. > Not quite what your posts on your own group would say! > >Bob Metcalfe, the creator of Ethernet said a few years ago "I would never > >participate in an online forum that I could not be the moderator of." His > >reasoning was that without proper moderation and guidance, groups have a > >tendency to descend into anarchy — something that the poster below is > >obviously trying to create. > Really? I would say IgAN.Org was spot on with it’s views and > information, not to mention it’s participants, except for sulkers like > yourself who could not stand other peoples views. > >"Hergte" <sa…@home.nl> wrote in message > >news:hcp570hr84r8cluluj5eucvga55dt21bac@4ax.com… > >On Tue, 6 Apr 2004 15:02:41 +0000 (UTC), Anonymous Sender > ><anonym…@remailer.metacolo.com> wrote: > >>It would seem we need to BEWARE who we seek advice from. > >>WWW.IGAN.CA is an heavily censored site, this includes the listserv > >>iga-nephropathy @yahoogroups.com. It is also run for financial reward. > >>The original IgAN help group was www.igan.org hosted by Russ George. > >>It is now proposed that the very valuable information on that website > >>is published once again, so that IgAN sufferers have a resource they > >>can trust once again. > >>please note we have no connection with igan.org this is a public > >>information service. Much of the information here over the next few > >>weeks you will NOT find at igan.ca, because it has been censored by a > >>misfit who left the real IgAN support group in a sulk. > >>Check it out yourselves and compare notes. > >> —————————————- > >>The IgAN Foundation > >>As you read these pages you may find a lot of unfamiliar technical and > >>medical words. For the most part you shouldn’t worry about knowing the > >>exact meaning of these specialist words right away. You will learn > >>most of what there is to know about IgA Nephropathy with or without a > >>full understanding of the technical words and you’ll learn their > >>meaning as you read on. > >>IgA Nephropathy or Berger’s ("burrjays") disease is the most common > >>non-diabetic kidney disease. It results when IgA a normal component of > >>the blood collects in the kidney as damaging deposits. These deposits > >>are an immune system defect, hence IgAN is considered an autoimmune > >>disease. Just why these deposits form is not known though a variety of > >>factors such as family genetics and coincident infections seem to play > >>important roles. > >>Included in the diagnosis of IgAN is Henoch Schoenlein Purpura (HSP) > >>where it involves the kidney and sometimes other forms of > >>glomerulonephritis (kidney disease). Available evidence suggests that > >>IgA nephropathy occurs from either increased production or reduced > >>clearance of the immune protein IgA and associated antigen complexes > >>that are ultimately deposited within the kidney. > >>Many sources categorize IgAN as a rare disease with some sources > >>claiming it afflicts 1:100,000. It seems that this estimated level of > >>incidence for IgAN is not accurate as a large proportion of patients > >>who present with IgAN symptoms have mild disease which is not > >>diagnosed via the accepted biopsy diagnosis. One published study > >>showed 94 out of 100,000 military inductees were diagnosed with IgAN. > >>Other published research of random autopsy kidney biopsies suggests > >>IgAN may be vastly more common and may affect up to 2-4% of the human > >>population at large. Certainly there is a dramatic variance in the > >>prevalence of diagnosed IgAN. In Japan and France where testing for > >>the condition is part of regular preventative medical care the disease > >>incidence is twice that found in the USA where testing for IgAN is > >>rarely performed as preventative medicine. Most people probably never > >>realize they have the disease or at least do not realize it until a > >>late stage. Amongst those diagnosed as having IgAN as many as 20%- 30% > >>will suffer eventual kidney failure within 10-20 years. They will > >>require life saving dialysis and/or a kidney transplant. > >>A Few Warning Signs of Kidney Disease > >>Tea colored urine > >>(hematuria – blood in the urine) > >>Very foamy urine > >>(proteinuria – protein in the urine) > >>Puffiness around the eyes, hands, or feet > >>(edema – fluid retention) > >>High blood pressure > >>Pain in the small of the back just below the ribs not aggravated by > >>motion. > >>Frequent urge to urinate especially at night and or reduced amount of > >>urine produced. > >>There are no "widely accepted" western medical treatments for IgAN > >>save in the latest stages of the disease. There is however growing > >>evidence that a number of therapies can be effective in delaying the > >>deterioration of kidney function for many years. Most nephrologists > >>with an active awareness of IgAN prescribe ACE inhibitors and fish oil > >>at a minimum. In some cases powerful steroid treatment is utilized. > >>For about half of those with IgAN tonsillectomy, which treats part of > >>the underlying immune disorder, is effective. There are additional new > >>treatments that show the promise of being a start on finding a cure > >>for the disease. > >>Research is one of the most important things this internet site is > >>able to do by collecting data from individuals with IgAN. Since this > >>condition is somewhat rare there are very few research projects > >>focusing attention on the disease simply because recruiting patients > >>to participate is difficult. Your help is desperately needed to find > >>treatments and cures for IgAN. If you find the information on this > >>site of use to you or your family please make a contribution of your > >>own personal medical data so we can learn more about this condition. > >>Just click on the menu item in the left hand margin. All submitted > >>data is kept in the strictest confidence and in accordance to > >>prevailing medical research rules. Your name will be kept secret and > >>your data use only for medical research on IgAN and related > >>conditions. Please help us by filling out the research questionnaire > >>on this site and returning once or twice a year to update us on your > >>condition. > >>Foundation Mission Statement > >>The IgAN Foundation’s mission is to provide vital and the latest > >>information on the diagnosis and treatment of IgA Nephropathy to > >>patients, their families, and their healthcare providers. We also > >>serve as a voice for the multitudes of IgAN patients as advocates for > >>enlightened regulatory, research, and appropriate funding policies > >>affecting treatment and research. Most of all we hope to inspire > >>people to make informed choices amid uncertainty and to choose hope > >>over despair. > >>This page is here to enable and encourage world wide communication and > >>collaborative research on this common kidney disease. We are confident > >>that the IgAN Home Page will help us all to find effective treatments > >>and a cure for this disease. > >>——— > >>If you are interested in adding more information on your
… read more »
Response:
On Sun, 11 Apr 2004 01:26:48 GMT, "Walter C" <wcrosby…@earthlink.net> wrote: >Just because you are paranoid does not mean that people are suppressing the >truth from you…
Instead of hurling abuse and lying, would it not just be simpler to answer the questions and then amend your policies if it’s so painful to you? Lets try again, if you have nothing to hide it should be easy. 1: It’s easy to compare the information from your group, or rather lack of it, to what’s available on the net and Igan.org, we can clearly see there are gaping holes in available current information missing on your site, why would you suppress current thinking? 2: Why on your listserv is discussion on fish oil censored, therefore making it almost non existent despite it being a very serious debate in the field of IgAN among some of the worlds most eminent authorities? 3: Why on your listserv is discussion on tonsillectomy censored, therefore making it almost non existent despite it being a very serious debate in the field of IgAN among some of the worlds most eminent authorities? 4:Why have you chosen to abuse the spirit of moderation and use it to support your own mantra which stifles very serious debate on IgAN? Time for the owner to come clean it would seem. >Jeez — are you a conspiracy theorist or something?
No theory, just facts. If there are any lies here than legal action is a recourse available to you. Go on see if you can suppress the truth that way, with the whole world watching. My main concern would be why would you try to manipulate peoples thoughts when supposedly running a support group? there’s a sick name for it I’m sure. – Hide quoted text — Show quoted text ->"IgAN" <nomailfacil…@1230.net> wrote in message >news:qsog701gjnu6f9bd99f09aiaeteqclo8i3@4ax.com… >> On Sat, 10 Apr 2004 20:28:34 GMT, "Walter Crosby" >> <wcrosby…@earthlink.net> wrote: >> >Are you a nutcase or something? IGAN.ORG has not had a single posting >for >> >years. >> That’s because it’s now defunct. The facts therein are just as >> relevant today as they ever were, facts you try to suppress. Why? >> > In fact, a few months ago, when I went there, it was nothing but an >> >advertising site — obviously taken as a replacement for the URL’s >original >> >use. If you want to work with a dead site that has no members, then go >> >right ahead. The rest of the world will work with an active site. >> Delusions of grandeur? we’ll have to see about that. >> >Again — you’re the one with the problem here, not the moderators or >members >> >of the other site. >> I just want people to know the truth, you try to hide it and then hurl >> abuse when confronted. >> Again I ask why do you try to suppress the truth? >> >"IgAN" <nomailfacil…@1230.net> wrote in message >> >news:mu4f70t4vgsr6c0u9v6mpfvhct72ts47rl@4ax.com… >> >> On Sat, 10 Apr 2004 03:49:42 GMT, "Walter Crosby" >> >> <wcrosby…@earthlink.net> wrote: >> >> >The posting below is an outrageous lie >> >> I think we can make our own mind up about that by simply comparing >> >> available information on the old IgAN.org site and yours! seems >> >> strange yours lacks quite a bit? >> >> > by someone that is upset that >> >> >postings regarding untested and unproven treatments would not be >allowed >> >by >> >> >the Yahoo group moderators. I know, because I was the moderator that >> >would >> >> >not allow the posting. >> >> One posting? there would appear to be ZERO! posting on your group >> >> showing alternative views to yours! considering all treatments in IgAN >> >> are unproven as it is a relatively new disease in medical terms, and >> >> that the majority of medicine available todays is from unproven >> >> sources and alternative therapies makes your one sided view a little >> >> obvious and clearly shows why we need to beware of censorship on the >> >> net. >> >> People like you are in grave danger of making a mockery of all the >> >> internet stands for. Freedom to access information from all sources. >> >> If you have a group with a claimed membership of thousands then it’s >> >> obvious we need to protect those people. If it’s so innocent, why not >> >> inform people before signing up the views are yours and yours alone? >> >> >To hide behind this anonymous posting and make it sound like the Yahoo >> >Group >> >> >is doing something wrong is outrageous and a disservice to the >thousands >> >of >> >> >people that get help everyday from igan.ca and the Yahoo Group. >> >> No it’s exposing you for what you are, why would the truth hurt you? >> >> >If you want to believe the paranoid rantings of a person that doesn’t >> >have >> >> >the guts to put their name on their posting, then go right ahead. >> >> It’s easy to compare the information from your group, or rather lack >> >> of it, to whats available on the net and Igan.org, we can clearly see >> >> there are gaping holes in available current information missing on >> >> your site, why would you suppress current thinking? >> >> >Myself, I >> >> >prefer information that can be trusted — something I have been >getting >> >> >since December 2000 from the Yahoo group. >> >> Not quite what your posts on your own group would say! >> >> >Bob Metcalfe, the creator of Ethernet said a few years ago "I would >never >> >> >participate in an online forum that I could not be the moderator of." >> >His >> >> >reasoning was that without proper moderation and guidance, groups have >a >> >> >tendency to descend into anarchy — something that the poster below is >> >> >obviously trying to create. >> >> Really? I would say IgAN.Org was spot on with it’s views and >> >> information, not to mention it’s participants, except for sulkers like >> >> yourself who could not stand other peoples views. >> >> >"Hergte" <sa…@home.nl> wrote in message >> >> >news:hcp570hr84r8cluluj5eucvga55dt21bac@4ax.com… >> >> >On Tue, 6 Apr 2004 15:02:41 +0000 (UTC), Anonymous Sender >> >> ><anonym…@remailer.metacolo.com> wrote: >> >> >>It would seem we need to BEWARE who we seek advice from. >> >> >>WWW.IGAN.CA is an heavily censored site, this includes the listserv >> >> >>iga-nephropathy @yahoogroups.com. It is also run for financial >reward. >> >> >>The original IgAN help group was www.igan.org hosted by Russ George. >> >> >>It is now proposed that the very valuable information on that website >> >> >>is published once again, so that IgAN sufferers have a resource they >> >> >>can trust once again. >> >> >>please note we have no connection with igan.org this is a public >> >> >>information service. Much of the information here over the next few >> >> >>weeks you will NOT find at igan.ca, because it has been censored by a >> >> >>misfit who left the real IgAN support group in a sulk. >> >> >>Check it out yourselves and compare notes. >> >> >> —————————————- >> >> >>The IgAN Foundation >> >> >>As you read these pages you may find a lot of unfamiliar technical >and >> >> >>medical words. For the most part you shouldn’t worry about knowing >the >> >> >>exact meaning of these specialist words right away. You will learn >> >> >>most of what there is to know about IgA Nephropathy with or without a >> >> >>full understanding of the technical words and you’ll learn their >> >> >>meaning as you read on. >> >> >>IgA Nephropathy or Berger’s ("burrjays") disease is the most common >> >> >>non-diabetic kidney disease. It results when IgA a normal component >of >> >> >>the blood collects in the kidney as damaging deposits. These deposits >> >> >>are an immune system defect, hence IgAN is considered an autoimmune >> >> >>disease. Just why these deposits form is not known though a variety >of >> >> >>factors such as family genetics and coincident infections seem to >play >> >> >>important roles. >> >> >>Included in the diagnosis of IgAN is Henoch Schoenlein Purpura (HSP) >> >> >>where it involves the kidney and sometimes other forms of >> >> >>glomerulonephritis (kidney disease). Available evidence suggests that >> >> >>IgA nephropathy occurs from either increased production or reduced >> >> >>clearance of the immune protein IgA and associated antigen complexes >> >> >>that are ultimately deposited within the kidney. >> >> >>Many sources categorize IgAN as a rare disease with some sources >> >> >>claiming it afflicts 1:100,000. It seems that this estimated level of >> >> >>incidence for IgAN is not accurate as a large proportion of patients >> >> >>who present with IgAN symptoms have mild disease which is not >> >> >>diagnosed via the accepted biopsy diagnosis. One published study >> >> >>showed 94 out of 100,000 military inductees were diagnosed with IgAN. >> >> >>Other published research of random autopsy kidney biopsies suggests >> >> >>IgAN may be vastly more common and may affect up to 2-4% of the human >> >> >>population at large. Certainly there is a dramatic variance in the >> >> >>prevalence of diagnosed IgAN. In Japan and France where testing for >> >> >>the condition is part of regular preventative medical care the >disease >> >> >>incidence is twice that found in the USA where testing for IgAN is >> >> >>rarely performed as preventative medicine. Most people probably never >> >> >>realize they have the disease or at least do not realize it until a >> >> >>late stage. Amongst those diagnosed as having IgAN as many as 20%- >30% >> >> >>will suffer eventual kidney failure within 10-20 years. They will >> >> >>require life saving dialysis and/or a kidney transplant. >> >> >>A Few Warning Signs of Kidney Disease >> >> >>Tea colored urine >> >> >>(hematuria – blood in the urine) >> >> >>Very foamy urine >> >> >>(proteinuria – protein in the urine) >> >> >>Puffiness around the eyes, hands, or feet
… read more »
Response:
Just because you are paranoid does not mean that people are suppressing the truth from you… Jeez — are you a conspiracy theorist or something? "IgAN" <nomailfacil…@1230.net> wrote in message
news:qsog701gjnu6f9bd99f09aiaeteqclo8i3@4ax.com… – Hide quoted text — Show quoted text -> On Sat, 10 Apr 2004 20:28:34 GMT, "Walter Crosby" > <wcrosby…@earthlink.net> wrote: > >Are you a nutcase or something? IGAN.ORG has not had a single posting for > >years. > That’s because it’s now defunct. The facts therein are just as > relevant today as they ever were, facts you try to suppress. Why? > > In fact, a few months ago, when I went there, it was nothing but an > >advertising site — obviously taken as a replacement for the URL’s original > >use. If you want to work with a dead site that has no members, then go > >right ahead. The rest of the world will work with an active site. > Delusions of grandeur? we’ll have to see about that. > >Again — you’re the one with the problem here, not the moderators or members > >of the other site. > I just want people to know the truth, you try to hide it and then hurl > abuse when confronted. > Again I ask why do you try to suppress the truth? > >"IgAN" <nomailfacil…@1230.net> wrote in message > >news:mu4f70t4vgsr6c0u9v6mpfvhct72ts47rl@4ax.com… > >> On Sat, 10 Apr 2004 03:49:42 GMT, "Walter Crosby" > >> <wcrosby…@earthlink.net> wrote: > >> >The posting below is an outrageous lie > >> I think we can make our own mind up about that by simply comparing > >> available information on the old IgAN.org site and yours! seems > >> strange yours lacks quite a bit? > >> > by someone that is upset that > >> >postings regarding untested and unproven treatments would not be allowed > >by > >> >the Yahoo group moderators. I know, because I was the moderator that > >would > >> >not allow the posting. > >> One posting? there would appear to be ZERO! posting on your group > >> showing alternative views to yours! considering all treatments in IgAN > >> are unproven as it is a relatively new disease in medical terms, and > >> that the majority of medicine available todays is from unproven > >> sources and alternative therapies makes your one sided view a little > >> obvious and clearly shows why we need to beware of censorship on the > >> net. > >> People like you are in grave danger of making a mockery of all the > >> internet stands for. Freedom to access information from all sources. > >> If you have a group with a claimed membership of thousands then it’s > >> obvious we need to protect those people. If it’s so innocent, why not > >> inform people before signing up the views are yours and yours alone? > >> >To hide behind this anonymous posting and make it sound like the Yahoo > >Group > >> >is doing something wrong is outrageous and a disservice to the thousands > >of > >> >people that get help everyday from igan.ca and the Yahoo Group. > >> No it’s exposing you for what you are, why would the truth hurt you? > >> >If you want to believe the paranoid rantings of a person that doesn’t > >have > >> >the guts to put their name on their posting, then go right ahead. > >> It’s easy to compare the information from your group, or rather lack > >> of it, to whats available on the net and Igan.org, we can clearly see > >> there are gaping holes in available current information missing on > >> your site, why would you suppress current thinking? > >> >Myself, I > >> >prefer information that can be trusted — something I have been getting > >> >since December 2000 from the Yahoo group. > >> Not quite what your posts on your own group would say! > >> >Bob Metcalfe, the creator of Ethernet said a few years ago "I would never > >> >participate in an online forum that I could not be the moderator of." > >His > >> >reasoning was that without proper moderation and guidance, groups have a > >> >tendency to descend into anarchy — something that the poster below is > >> >obviously trying to create. > >> Really? I would say IgAN.Org was spot on with it’s views and > >> information, not to mention it’s participants, except for sulkers like > >> yourself who could not stand other peoples views. > >> >"Hergte" <sa…@home.nl> wrote in message > >> >news:hcp570hr84r8cluluj5eucvga55dt21bac@4ax.com… > >> >On Tue, 6 Apr 2004 15:02:41 +0000 (UTC), Anonymous Sender > >> ><anonym…@remailer.metacolo.com> wrote: > >> >>It would seem we need to BEWARE who we seek advice from. > >> >>WWW.IGAN.CA is an heavily censored site, this includes the listserv > >> >>iga-nephropathy @yahoogroups.com. It is also run for financial reward. > >> >>The original IgAN help group was www.igan.org hosted by Russ George. > >> >>It is now proposed that the very valuable information on that website > >> >>is published once again, so that IgAN sufferers have a resource they > >> >>can trust once again. > >> >>please note we have no connection with igan.org this is a public > >> >>information service. Much of the information here over the next few > >> >>weeks you will NOT find at igan.ca, because it has been censored by a > >> >>misfit who left the real IgAN support group in a sulk. > >> >>Check it out yourselves and compare notes. > >> >> —————————————- > >> >>The IgAN Foundation > >> >>As you read these pages you may find a lot of unfamiliar technical and > >> >>medical words. For the most part you shouldn’t worry about knowing the > >> >>exact meaning of these specialist words right away. You will learn > >> >>most of what there is to know about IgA Nephropathy with or without a > >> >>full understanding of the technical words and you’ll learn their > >> >>meaning as you read on. > >> >>IgA Nephropathy or Berger’s ("burrjays") disease is the most common > >> >>non-diabetic kidney disease. It results when IgA a normal component of > >> >>the blood collects in the kidney as damaging deposits. These deposits > >> >>are an immune system defect, hence IgAN is considered an autoimmune > >> >>disease. Just why these deposits form is not known though a variety of > >> >>factors such as family genetics and coincident infections seem to play > >> >>important roles. > >> >>Included in the diagnosis of IgAN is Henoch Schoenlein Purpura (HSP) > >> >>where it involves the kidney and sometimes other forms of > >> >>glomerulonephritis (kidney disease). Available evidence suggests that > >> >>IgA nephropathy occurs from either increased production or reduced > >> >>clearance of the immune protein IgA and associated antigen complexes > >> >>that are ultimately deposited within the kidney. > >> >>Many sources categorize IgAN as a rare disease with some sources > >> >>claiming it afflicts 1:100,000. It seems that this estimated level of > >> >>incidence for IgAN is not accurate as a large proportion of patients > >> >>who present with IgAN symptoms have mild disease which is not > >> >>diagnosed via the accepted biopsy diagnosis. One published study > >> >>showed 94 out of 100,000 military inductees were diagnosed with IgAN. > >> >>Other published research of random autopsy kidney biopsies suggests > >> >>IgAN may be vastly more common and may affect up to 2-4% of the human > >> >>population at large. Certainly there is a dramatic variance in the > >> >>prevalence of diagnosed IgAN. In Japan and France where testing for > >> >>the condition is part of regular preventative medical care the disease > >> >>incidence is twice that found in the USA where testing for IgAN is > >> >>rarely performed as preventative medicine. Most people probably never > >> >>realize they have the disease or at least do not realize it until a > >> >>late stage. Amongst those diagnosed as having IgAN as many as 20%- 30% > >> >>will suffer eventual kidney failure within 10-20 years. They will > >> >>require life saving dialysis and/or a kidney transplant. > >> >>A Few Warning Signs of Kidney Disease > >> >>Tea colored urine > >> >>(hematuria – blood in the urine) > >> >>Very foamy urine > >> >>(proteinuria – protein in the urine) > >> >>Puffiness around the eyes, hands, or feet > >> >>(edema – fluid retention) > >> >>High blood pressure > >> >>Pain in the small of the back just below the ribs not aggravated by > >> >>motion. > >> >>Frequent urge to urinate especially at night and or reduced amount of > >> >>urine produced. > >> >>There are no "widely accepted" western medical treatments for IgAN > >> >>save in the latest stages of the disease. There is however growing > >> >>evidence that a number of therapies can be effective in delaying the > >> >>deterioration of kidney function for many years. Most nephrologists > >> >>with an active awareness of IgAN prescribe ACE inhibitors and fish oil > >> >>at a minimum. In some cases powerful steroid treatment is utilized. > >> >>For about half of those with IgAN tonsillectomy, which treats part of > >> >>the underlying immune disorder, is effective. There are additional new > >> >>treatments that show the promise of being a start on finding a cure > >> >>for the disease. > >> >>Research is one of the most important things this internet site is > >> >>able to do by collecting data from individuals with IgAN. Since this > >> >>condition is somewhat rare there are very few research projects > >> >>focusing attention on the disease simply because recruiting patients > >> >>to participate is difficult. Your help is desperately needed to find > >> >>treatments and cures for IgAN. If you find the information on this > >> >>site of use to you or your family please make a contribution of your > >> >>own personal medical data so we can learn more about this condition. > >> >>Just click on the menu item in the left hand margin. All submitted > >> >>data is kept
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Response:
On Sat, 10 Apr 2004 20:28:34 GMT, "Walter Crosby" <wcrosby…@earthlink.net> wrote: >Are you a nutcase or something? IGAN.ORG has not had a single posting for >years.
That’s because it’s now defunct. The facts therein are just as relevant today as they ever were, facts you try to suppress. Why? > In fact, a few months ago, when I went there, it was nothing but an >advertising site — obviously taken as a replacement for the URL’s original >use. If you want to work with a dead site that has no members, then go >right ahead. The rest of the world will work with an active site.
Delusions of grandeur? we’ll have to see about that. >Again — you’re the one with the problem here, not the moderators or members >of the other site.
I just want people to know the truth, you try to hide it and then hurl abuse when confronted. Again I ask why do you try to suppress the truth? – Hide quoted text — Show quoted text ->"IgAN" <nomailfacil…@1230.net> wrote in message >news:mu4f70t4vgsr6c0u9v6mpfvhct72ts47rl@4ax.com… >> On Sat, 10 Apr 2004 03:49:42 GMT, "Walter Crosby" >> <wcrosby…@earthlink.net> wrote: >> >The posting below is an outrageous lie >> I think we can make our own mind up about that by simply comparing >> available information on the old IgAN.org site and yours! seems >> strange yours lacks quite a bit? >> > by someone that is upset that >> >postings regarding untested and unproven treatments would not be allowed >by >> >the Yahoo group moderators. I know, because I was the moderator that >would >> >not allow the posting. >> One posting? there would appear to be ZERO! posting on your group >> showing alternative views to yours! considering all treatments in IgAN >> are unproven as it is a relatively new disease in medical terms, and >> that the majority of medicine available todays is from unproven >> sources and alternative therapies makes your one sided view a little >> obvious and clearly shows why we need to beware of censorship on the >> net. >> People like you are in grave danger of making a mockery of all the >> internet stands for. Freedom to access information from all sources. >> If you have a group with a claimed membership of thousands then it’s >> obvious we need to protect those people. If it’s so innocent, why not >> inform people before signing up the views are yours and yours alone? >> >To hide behind this anonymous posting and make it sound like the Yahoo >Group >> >is doing something wrong is outrageous and a disservice to the thousands >of >> >people that get help everyday from igan.ca and the Yahoo Group. >> No it’s exposing you for what you are, why would the truth hurt you? >> >If you want to believe the paranoid rantings of a person that doesn’t >have >> >the guts to put their name on their posting, then go right ahead. >> It’s easy to compare the information from your group, or rather lack >> of it, to whats available on the net and Igan.org, we can clearly see >> there are gaping holes in available current information missing on >> your site, why would you suppress current thinking? >> >Myself, I >> >prefer information that can be trusted — something I have been getting >> >since December 2000 from the Yahoo group. >> Not quite what your posts on your own group would say! >> >Bob Metcalfe, the creator of Ethernet said a few years ago "I would never >> >participate in an online forum that I could not be the moderator of." >His >> >reasoning was that without proper moderation and guidance, groups have a >> >tendency to descend into anarchy — something that the poster below is >> >obviously trying to create. >> Really? I would say IgAN.Org was spot on with it’s views and >> information, not to mention it’s participants, except for sulkers like >> yourself who could not stand other peoples views. >> >"Hergte" <sa…@home.nl> wrote in message >> >news:hcp570hr84r8cluluj5eucvga55dt21bac@4ax.com… >> >On Tue, 6 Apr 2004 15:02:41 +0000 (UTC), Anonymous Sender >> ><anonym…@remailer.metacolo.com> wrote: >> >>It would seem we need to BEWARE who we seek advice from. >> >>WWW.IGAN.CA is an heavily censored site, this includes the listserv >> >>iga-nephropathy @yahoogroups.com. It is also run for financial reward. >> >>The original IgAN help group was www.igan.org hosted by Russ George. >> >>It is now proposed that the very valuable information on that website >> >>is published once again, so that IgAN sufferers have a resource they >> >>can trust once again. >> >>please note we have no connection with igan.org this is a public >> >>information service. Much of the information here over the next few >> >>weeks you will NOT find at igan.ca, because it has been censored by a >> >>misfit who left the real IgAN support group in a sulk. >> >>Check it out yourselves and compare notes. >> >> —————————————- >> >>The IgAN Foundation >> >>As you read these pages you may find a lot of unfamiliar technical and >> >>medical words. For the most part you shouldn’t worry about knowing the >> >>exact meaning of these specialist words right away. You will learn >> >>most of what there is to know about IgA Nephropathy with or without a >> >>full understanding of the technical words and you’ll learn their >> >>meaning as you read on. >> >>IgA Nephropathy or Berger’s ("burrjays") disease is the most common >> >>non-diabetic kidney disease. It results when IgA a normal component of >> >>the blood collects in the kidney as damaging deposits. These deposits >> >>are an immune system defect, hence IgAN is considered an autoimmune >> >>disease. Just why these deposits form is not known though a variety of >> >>factors such as family genetics and coincident infections seem to play >> >>important roles. >> >>Included in the diagnosis of IgAN is Henoch Schoenlein Purpura (HSP) >> >>where it involves the kidney and sometimes other forms of >> >>glomerulonephritis (kidney disease). Available evidence suggests that >> >>IgA nephropathy occurs from either increased production or reduced >> >>clearance of the immune protein IgA and associated antigen complexes >> >>that are ultimately deposited within the kidney. >> >>Many sources categorize IgAN as a rare disease with some sources >> >>claiming it afflicts 1:100,000. It seems that this estimated level of >> >>incidence for IgAN is not accurate as a large proportion of patients >> >>who present with IgAN symptoms have mild disease which is not >> >>diagnosed via the accepted biopsy diagnosis. One published study >> >>showed 94 out of 100,000 military inductees were diagnosed with IgAN. >> >>Other published research of random autopsy kidney biopsies suggests >> >>IgAN may be vastly more common and may affect up to 2-4% of the human >> >>population at large. Certainly there is a dramatic variance in the >> >>prevalence of diagnosed IgAN. In Japan and France where testing for >> >>the condition is part of regular preventative medical care the disease >> >>incidence is twice that found in the USA where testing for IgAN is >> >>rarely performed as preventative medicine. Most people probably never >> >>realize they have the disease or at least do not realize it until a >> >>late stage. Amongst those diagnosed as having IgAN as many as 20%- 30% >> >>will suffer eventual kidney failure within 10-20 years. They will >> >>require life saving dialysis and/or a kidney transplant. >> >>A Few Warning Signs of Kidney Disease >> >>Tea colored urine >> >>(hematuria – blood in the urine) >> >>Very foamy urine >> >>(proteinuria – protein in the urine) >> >>Puffiness around the eyes, hands, or feet >> >>(edema – fluid retention) >> >>High blood pressure >> >>Pain in the small of the back just below the ribs not aggravated by >> >>motion. >> >>Frequent urge to urinate especially at night and or reduced amount of >> >>urine produced. >> >>There are no "widely accepted" western medical treatments for IgAN >> >>save in the latest stages of the disease. There is however growing >> >>evidence that a number of therapies can be effective in delaying the >> >>deterioration of kidney function for many years. Most nephrologists >> >>with an active awareness of IgAN prescribe ACE inhibitors and fish oil >> >>at a minimum. In some cases powerful steroid treatment is utilized. >> >>For about half of those with IgAN tonsillectomy, which treats part of >> >>the underlying immune disorder, is effective. There are additional new >> >>treatments that show the promise of being a start on finding a cure >> >>for the disease. >> >>Research is one of the most important things this internet site is >> >>able to do by collecting data from individuals with IgAN. Since this >> >>condition is somewhat rare there are very few research projects >> >>focusing attention on the disease simply because recruiting patients >> >>to participate is difficult. Your help is desperately needed to find >> >>treatments and cures for IgAN. If you find the information on this >> >>site of use to you or your family please make a contribution of your >> >>own personal medical data so we can learn more about this condition. >> >>Just click on the menu item in the left hand margin. All submitted >> >>data is kept in the strictest confidence and in accordance to >> >>prevailing medical research rules. Your name will be kept secret and >> >>your data use only for medical research on IgAN and related >> >>conditions. Please help us by filling out the research questionnaire >> >>on this site and returning once or twice a year to update us on your >> >>condition. >> >>Foundation Mission Statement >> >>The IgAN Foundation’s mission is to provide vital and the latest >> >>information on the diagnosis and treatment of IgA Nephropathy to >> >>patients, their families, and their healthcare providers. We also >> >>serve as a voice for the
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Response:
J Am Soc Nephrol 13:142-148, 2002
Posted in Minimal Change Disease | 
No Comments » | 
I’m trying to find out if anyone has had a biopsy in such a situation (having only one functioning) and to ascertain what the medical benefit besides giving it a name will be. Sorry for the long message. 