Guest guest Posted July 9, 2000 Report Share Posted July 9, 2000 Well Mark, no wonder doctors dont like the internet. Advising to seek 4th and 5th opinions and to doubt them! For heavens sake where will it all end? Very good article. Does make one wonder bout the viral theory when that woman doing story of the man whose sister had scleroderma comes down with it too. I believe I read that there are as many people with SS as with Lupus yet it is an unknown disease to the public in general. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2000 Report Share Posted July 9, 2000 Dear , I don't think that story should make you doubt the viral theory at all. The fact that they are sisters means they grew up in the same environment ( and still could be ) and were quite possibly exposed to the same mycoplasmas. (viruses etc.) In one area near where I live there is a very high incidence of MS. One lady I know has the disease throughout her whole family and they all grew up together in this very small town. I also know that there is a higher incidence of Lupus in this area as well. As for schleroderma, you are right. I didn't hear of it until I read " The Road Back. " When I first heard about it I assumed it was a something along the lines of excema by the name. Boy do I know differently now and I feel for all of those who suffer from it. Lee-Anne wrote: > Well Mark, no wonder doctors dont like the internet. Advising to seek > 4th and 5th opinions and to doubt them! For heavens sake where will > it all end? > > Very good article. Does make one wonder bout the viral theory when > that woman doing story of the man whose sister had scleroderma comes > down with it too. I believe I read that there are as many people with > SS as with Lupus yet it is an unknown disease to the public in > general. > > ------------------------------------------------------------------------ > Free, Unlimited Calls Anywhere! > Visit Firetalk.com - click below. > 1/5479/0/_/532797/_/963187067/ > ------------------------------------------------------------------------ > > To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2000 Report Share Posted July 9, 2000 FOR ALL SCLERADERMAS AND THE REST OF YOU INTERESTED. Maureen called me to tell me that tomorrow (Monday)'s movie is about the tv star whose sister died of scleraderma. I think they called it FOR HOPE. Have not seen this and we must all remember that this is not an AP person. Also, Maureen will be featured on EXTRA sometime within the next week or two. This is daily tv tabloid show and they spent an entire day with her. They told her this is one of the most inspiring and uplifting stories they have done thus far. I do not believe I get this show here locally and am really sorry to miss it. Will be interested in hearing what all of you think. wrote: > Well Mark, no wonder doctors dont like the internet. Advising to seek > 4th and 5th opinions and to doubt them! For heavens sake where will > it all end? > > Very good article. Does make one wonder bout the viral theory when > that woman doing story of the man whose sister had scleroderma comes > down with it too. I believe I read that there are as many people with > SS as with Lupus yet it is an unknown disease to the public in > general. > > ------------------------------------------------------------------------ > Free, Unlimited Calls Anywhere! > Visit Firetalk.com - click below. > 1/5479/0/_/532797/_/963187067/ > ------------------------------------------------------------------------ > > To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2000 Report Share Posted July 9, 2000 In a message dated 07/09/2000 8:28:00 PM Pacific Daylight Time, slfain@... writes: << I think they called it FOR HOPE. Have not seen this and we must all remember that this is not an AP person. >> I have seen it before your right it is not an antibiotic therapy show. The Sclaraderma foundation is here in my town, and they do not look at antibiotic therapy. It is a goodstudy in how not to treat your disease in my opinion. I did see Sharon Munsky on the news today, promoting the movie, and she looked pretty good. Course I have seen her at the same DR who put me on antibiotics and I can only assume she is on them as well, and thinks she is taking them for a secondary cause. At any rate she does not look as if your condition has worsened in the last 5 years. So it is sad they do not explore the antibiotic theory. This is one of the reasons I would like to collect our stories and put them in a book. I am hoping some of you will consent to let me use the support stories you have posted on the rheumatic.org web site. let me know if I have your permission :-) Pritchard Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2000 Report Share Posted July 9, 2000 It's very very depressing - as you said, this is not an antibiotic story. Chris. >FOR ALL SCLERADERMAS AND THE REST OF YOU INTERESTED. >Maureen called me to tell me that tomorrow (Monday)'s movie is about >the tv star whose sister died of scleraderma. I think they called it FOR >HOPE. Have not seen this and we must all remember that this is not an AP >person. Also, Maureen will be featured on EXTRA sometime within the next >week or two. This is daily tv tabloid show and they spent an entire day with >her. They told her this is one of the most inspiring and uplifting stories >they have done thus far. I do not believe I get this show here locally and >am really sorry to miss it. Will be interested in hearing what all of you >think. > > wrote: > >> Well Mark, no wonder doctors dont like the internet. Advising to seek >> 4th and 5th opinions and to doubt them! For heavens sake where will >> it all end? >> >> Very good article. Does make one wonder bout the viral theory when >> that woman doing story of the man whose sister had scleroderma comes >> down with it too. I believe I read that there are as many people with >> SS as with Lupus yet it is an unknown disease to the public in >> general. >> >> ------------------------------------------------------------------------ >> Free, Unlimited Calls Anywhere! >> Visit Firetalk.com - click below. >> 1/5479/0/_/532797/_/963187067/ >> ------------------------------------------------------------------------ >> >> To unsubscribe, email: rheumatic-unsubscribeegroups > > >------------------------------------------------------------------------ >Life's too short to send boring email. Let SuperSig come to the rescue. >1/6137/0/_/532797/_/963199606/ >------------------------------------------------------------------------ > >To unsubscribe, email: rheumatic-unsubscribeegroups > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2000 Report Share Posted July 10, 2000 , The movie is called " For Hope " and it's on tonight (Monday) on ABC. It's produced by Bob Sagat and tells the story of his sister's battle with scleroderma. I saw it a few years back before I had RA myself but I remember being appalled by the medical treatment she received. As I recall, the movie was very well done and is worth watching if for no other reason than to illustrate why we must continue to battle with our doctors to get what we feel is the appropriate treatment for us. Hugs, a Peden Fain wrote: > > FOR ALL SCLERADERMAS AND THE REST OF YOU INTERESTED. > Maureen called me to tell me that tomorrow (Monday)'s movie is about > the tv star whose sister died of scleraderma. I think they called it FOR > HOPE. Have not seen this and we must all remember that this is not an AP > person... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2000 Report Share Posted July 10, 2000 Yes it is very depressing and in the end the Scleroderma Foundation gets a little free advertising to raise money for research.....for what I don't know? Donna Ottawa, Canada Scleroderma, Jan.95, AP Oct.97 (My Story) http://www3.sympatico.ca/mousepotatoes ) (Ottawa Support) http://www3.sympatico.ca/mousepotatoes/rbf.html Re: rheumatic Re: CNN Story > >It's very very depressing - as you said, this is not an antibiotic story. > >Chris. > >>FOR ALL SCLERADERMAS AND THE REST OF YOU INTERESTED. >>Maureen called me to tell me that tomorrow (Monday)'s movie is about > >>the tv star whose sister died of scleraderma. I think they called it FOR >>HOPE. Have not seen this and we must all remember that this is not an AP >>person. Also, Maureen will be featured on EXTRA sometime within the next >>week or two. This is daily tv tabloid show and they spent an entire day with > >>her. They told her this is one of the most inspiring and uplifting stories > >>they have done thus far. I do not believe I get this show here locally and > >>am really sorry to miss it. Will be interested in hearing what all of you > >>think. >> >> wrote: >> >>> Well Mark, no wonder doctors dont like the internet. Advising to seek >>> 4th and 5th opinions and to doubt them! For heavens sake where will >>> it all end? >>> >>> Very good article. Does make one wonder bout the viral theory when >>> that woman doing story of the man whose sister had scleroderma comes >>> down with it too. I believe I read that there are as many people with >>> SS as with Lupus yet it is an unknown disease to the public in >>> general. >>> >>> ------------------------------------------------------------------------ > >>> Free, Unlimited Calls Anywhere! >>> Visit Firetalk.com - click below. >>> 1/5479/0/_/532797/_/963187067/ >>> ------------------------------------------------------------------------ > >>> >>> To unsubscribe, email: rheumatic-unsubscribeegroups >> >> >>------------------------------------------------------------------------ >>Life's too short to send boring email. Let SuperSig come to the rescue. >>1/6137/0/_/532797/_/963199606/ >>------------------------------------------------------------------------ >> >>To unsubscribe, email: rheumatic-unsubscribeegroups >> >> >> > > >------------------------------------------------------------------------ >Best friends, most artistic, class clown Find 'em here: >1/5533/0/_/532797/_/963202444/ >------------------------------------------------------------------------ > >To unsubscribe, email: rheumatic-unsubscribeegroups > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2000 Report Share Posted July 11, 2000 all information comes out when the people are ready for it- I don't mean to sound depressing or negative- it's sorta like that ol' Asian saying " when you listen most quietly then you gain the most strength " (well , that's my mixed up English version of it anyhow-y'all- you people -everyone and all keep trucking! It will happen for the good for everyone SOONER than we all think ) Love, Mrs. Gena Lynn Castanon genaca@... Re: rheumatic Re: CNN Story > > >> >>It's very very depressing - as you said, this is not an antibiotic story. >> >>Chris. >> >>>FOR ALL SCLERADERMAS AND THE REST OF YOU INTERESTED. >>>Maureen called me to tell me that tomorrow (Monday)'s movie is >about >> >>>the tv star whose sister died of scleraderma. I think they called it FOR >>>HOPE. Have not seen this and we must all remember that this is not an AP >>>person. Also, Maureen will be featured on EXTRA sometime within the next >>>week or two. This is daily tv tabloid show and they spent an entire day >with >> >>>her. They told her this is one of the most inspiring and uplifting >stories >> >>>they have done thus far. I do not believe I get this show here locally >and >> >>>am really sorry to miss it. Will be interested in hearing what all of you >> >>>think. >>> >>> wrote: >>> >>>> Well Mark, no wonder doctors dont like the internet. Advising to seek >>>> 4th and 5th opinions and to doubt them! For heavens sake where will >>>> it all end? >>>> >>>> Very good article. Does make one wonder bout the viral theory when >>>> that woman doing story of the man whose sister had scleroderma comes >>>> down with it too. I believe I read that there are as many people with >>>> SS as with Lupus yet it is an unknown disease to the public in >>>> general. >>>> >>>> ----------------------------------------------------------------------- - >> >>>> Free, Unlimited Calls Anywhere! >>>> Visit Firetalk.com - click below. >>>> 1/5479/0/_/532797/_/963187067/ >>>> ----------------------------------------------------------------------- - >> >>>> >>>> To unsubscribe, email: rheumatic-unsubscribeegroups >>> >>> >>>------------------------------------------------------------------------ >>>Life's too short to send boring email. Let SuperSig come to the rescue. >>>1/6137/0/_/532797/_/963199606/ >>>------------------------------------------------------------------------ >>> >>>To unsubscribe, email: rheumatic-unsubscribeegroups >>> >>> >>> >> >> >>------------------------------------------------------------------------ >>Best friends, most artistic, class clown Find 'em here: >>1/5533/0/_/532797/_/963202444/ >>------------------------------------------------------------------------ >> >>To unsubscribe, email: rheumatic-unsubscribeegroups >> >> >> > > >------------------------------------------------------------------------ >Need a credit card? >Instant Approval and 0% intro APR with Aria! >1/6034/0/_/532797/_/963258094/ >------------------------------------------------------------------------ > >To unsubscribe, email: rheumatic-unsubscribeegroups > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2000 Report Share Posted August 26, 2000 Barbara, If CNN is airing a sick buildings story, it would likely be as part of their " Your Health " series which airs Sunday at 3:00 PM (ET). Best, Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2000 Report Share Posted August 30, 2000 Hi Barbara, The story that aired on Sunday was 'No Safe Haven' produced by Ken Shiffman and Daphne Algom, reporter Pattilo. The subject was the slack job the inspectors do on homes with lead and the effects especially on the children. It was an extremely interesting and sad piece. I am going to order a video and transcript. My husband works for the housing authority in our area and comes up against ignorant inspectors continually. The video/transcript will be used to educate them on the dangers that are not taken seriously and so often overlooked. Well worth the money, Nan If you are interested below is a list where these items may be obtained. The show may have been a re-broadcast so the transcript availability on the chat feature does not work. ****************************************** Thank you for contacting CNN Interactive. Transcripts of CNN programs are available on our Web site at http://cnn.com/chat for 10 days from the time the program aired on CNN. For on-line CNN transcripts via subscription, contact LEXIS-NEXIS 1- 800-543-6862 (Lexis) or 1-800-346-9759 (Nexis) or visit their Web site at http://www.lexis-nexis.com. For a video tape or transcript of CNN programs that aired after October 1996, contact FEDERAL DOCUMENT CLEARINGHOUSE, INC. at 1-800- CNN-NEWS or 313-416-8201. You may write them at 1100 Mercantile Lane, Landover, land 20785. --- In egroups, " barbara herskovitz " <bherk@b...> wrote: > If any of you are listening to CNN and hear about a program they are doing > on sick buildings - please let us know. A member mentioned something about > it - but didn't know the time or date, but thought it was sometime this > coming Sunday. > > Thanks, > > Barbara Quote Link to comment Share on other sites More sharing options...
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