Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 Hi , What a nice article about your life and illness. Some people just don't understand that Arthritis can strike the young as well as the elderly. Are they planning to do follow ups on you? xxoo Ca. Carmen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 Hi , What a nice article about your life and illness. Some people just don't understand that Arthritis can strike the young as well as the elderly. Are they planning to do follow ups on you? xxoo Ca. Carmen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 : That was a very good article. I wish that we could get more people to publish articles like that about Arthritis and Stills and all the other types of Arthritis. It would be one great big help! Looks like you should keep that reporter updated on a regular basis? Take care now and be PAIN FREE! Love Ya! We Will Win Love Y'all Mom & Dad Bob & Carole Panama City, Florida Please Visit the International Stills Disease Foundation Web Site at: www.stillsdisease.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 , Thank you for sharing your truely amazing story. You are an inspiration! from MA Article Hello Everyone, I thought I would share this with all of you. My local paper her in Kalispell last year did a story on me. It was suppose to be done the week before but they didn't have enought time or space at the moment. Coming up in March the first week is Juvenile Arthritis Awareness Week. Please spread the word. Everyone Needs to know that All forms of Arthritis can effect anyone at any age, and yes also Kids. This world still thinks that Arthritis is only for older people and then when someone close to them finds out that they have arthritis it shocks them. They always end up saying, I'm to young to have arthritis, or there to young to have arthritis. Everone needs to be aware that it doesn't matter your age. One day I hope there is a big campagn About arthritis effecting at any age, Just like so many other illnesses effect all ages. Until that day comes its our job to help make everyone aware. Until next time take care http://www.dailyinterlake.com/NewsEngine/SelectStory.tpl? command=search & db=news.db & eqskudata=20-814762-61 & search-var= " We are all Normal, just some of us have more bumps in our lives then others Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 wrote: > Hello Everyone, > I thought I would share this with all of you. My local paper her in > Kalispell last year did a story on me. Sorry about the previous quote, I need to read all my messages before I respond, lol. I would love to read the article they wrote, would it be possible to email a copy?? Lots of love, Louise. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2003 Report Share Posted February 19, 2003 > . Sorry to be so loopy tonight, I need to go to bed!! I finally got to the article and it was wonderful, you are a great fellow. Lots of love, Louise. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2003 Report Share Posted July 14, 2003 hi sharon, i think i have a copy of it in teds book of stuff i saved i'll go look. gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2003 Report Share Posted July 14, 2003 http://www.altonweb.com/cs/downsyndrome/index.htm?page=willaptitudes.html > There is a columnist for Newsweek magazine, I believe his name is Will. > He has a son with DS. Several years ago, he wrote a wonderful article about his > son, and I was wondering if anyone had a copy of it, or knew where I could find > it. > > Thanks > Sharon H. > Mom to , (11, DS) and , (8) > South Carolina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2003 Report Share Posted July 14, 2003 Hi I don't have the article on hand but it was the May 3 or May 5, 1993 issue of Newsweek. The one for the first week of May. You should be able to find a copy at a book store, flea market, E Bay, or a library. Yes, it is a wonderful article. I used it in my thesis paper when I got my MA in English. article > There is a columnist for Newsweek magazine, I believe his name is Will. He has a son with DS. Several years ago, he wrote a wonderful article about his son, and I was wondering if anyone had a copy of it, or knew where I could find it. > > Thanks > Sharon H. > Mom to , (11, DS) and , (8) > South Carolina > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2003 Report Share Posted July 15, 2003 This article was given to us when Bridget was in the hospital. She was just about 4 weeks old and the neonatologist was in his early 30s. He was impressed by us as parents and wanted to share some positive light which he personally believed in....unlike the neonatologist that was on duty when Bridget was born. mom to Bridget 10 Re: article http://www.altonweb.com/cs/downsyndrome/index.htm?page=willaptitudes.html > There is a columnist for Newsweek magazine, I believe his name is Will. > He has a son with DS. Several years ago, he wrote a wonderful article about his > son, and I was wondering if anyone had a copy of it, or knew where I could find > it. > > Thanks > Sharon H. > Mom to , (11, DS) and , (8) > South Carolina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2003 Report Share Posted November 21, 2003 That link took me to 52 search results???? article This article from immunesupport might be useful http://www.immunesupport.com/library/bulletinarticle.cfm? ID=5187 & PROD=N0134 I cowrote it with Byron White a friend of mine, we both have lyme Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2003 Report Share Posted November 21, 2003 Hmmm. You might have to type int he whole address as it doens't seem to link properly as part of the URL gets cut off. The whole address is: http://www.immunesupport.com/library/bulletinarticle.cfm? ID=5187 & PROD=N0134 > That link took me to 52 search results???? > > article > > > This article from immunesupport might be useful > > http://www.immunesupport.com/library/bulletinarticle.cfm? > ID=5187 & PROD=N0134 > > I cowrote it with Byron White a friend of mine, we both have lyme > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2003 Report Share Posted November 22, 2003 > Hmmm. You might have to type int he whole address as it doens't seem > to link properly as part of the URL gets cut off. The whole address > is: > Hi Thanks very much for that very interesting article. They have a hyperbaric oxygen unit about 20 miles from my home which is meant for patients with MS. I wonder if they would let me use it and would once a week be of any benefit at all? Thanks Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2003 Report Share Posted November 22, 2003 Well, if you go there and try it, you'll know the effect on you. I've heard of it helping some MS patients, and they do it twice a week. Oddly, I've heard of function coming back int he chamber and going away a few hours later. I think you could try it though I'd say more than once a week. And if it seems to help you might consider getting one at home, because over the longterm its cost effective. (I.E. I don't think it cures MS, it is palliative) > > Hmmm. You might have to type int he whole address as it doens't > seem > > to link properly as part of the URL gets cut off. The whole > address > > is: > > > Hi > > Thanks very much for that very interesting article. They have a > hyperbaric oxygen unit about 20 miles from my home which is meant > for patients with MS. I wonder if they would let me use it and > would once a week be of any benefit at all? > > Thanks > > Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2003 Report Share Posted December 13, 2003 , That is great article... I hope all of the moms on this list make a copy of it to present to their childs ortho doc. Especially the ones that recommend surgical intervention on newly diagnosed or moderate infantile scoliosis before they attempt anything else. I was asked to speak to a class of 2nd year pediatric med students..I will definately present this article.. Great research !! Please keep the articles coming.. Articles like this will help I.S.O.P.'s research study. Proof like this will help me aquire the docs we need to do the study. Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2003 Report Share Posted December 13, 2003 , Your very welcome! Anything I can do to help! Just let me know!! I actually found a whole list of these types of articles. Most of them about surgical techniques. I cant believe some of the side effects and problems with some. One actually had more difficulties then patients... and in the end they STILL say it was a success!!ITS INSANE!! Im trying to find the database most are stored in so you can look yourself. Ill let you know when I find it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2003 Report Share Posted December 14, 2003 Right on !!! That is so great.. This info is needed for I.S.O.P.'s next step. Please keep them coming, because we all need them.. I have a notebook I am compiling for this sort of info on I.S. Any documented articles that you find would be of benefit.. I cant tell you how much I appreciate this!!! sincerely, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2004 Report Share Posted July 23, 2004 this article will send chills down your spine. The writer makes reference to children in special education and the costs to taxpayers and if it worth teaching " these " children. Read it and weep. SPECIAL ed limits Bradenton Herald - Bradenton,FL,USA The board has decided to countersue the mother of a fourth-grader with Attention Deficit Hyperactivity Disorder (ADHD) who took the district to court ... http://www.bradenton.com/mld/bradenton/news/opinion/9181536.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 There is a good article in last week's New England Journal of Medicine. It is a case presentation with a multidisciplinary (medical, nutritional, and psychological) approach. Aug. 12 issue, Vol. 351, 696-704. Granted this is only one case but it is a good article and a step in the right direction. In the same issue (p. 721) is a letter to the editor discussing the maternal and fetal death that was in the news last week. ~Kay Re: use of straws , I do have an article on this (interdisciplinary approach) I just have to see if I can locate it. I used it when developing our program. I'll see if I can dig it up. LIA > Is anyone aware of any research articles that show a benefit to patient> outcomes using an interdisciplinary approach? How would you suggest> emphasizing the need to surgeons, administration, etc ("legally and> morally") for nutrition services?> THanks> > Dillenbeck, RD, CD, CDE> Dept of Health and Nutrition Education> UW-Health> 20 South Park Street Suite 402> Madison, WI 53715> (608) 287-2770-> >>> nutritionnut89@y... 08/25/04 07:18PM >>>> we also do not recommend straws due to the ingesting of air as well > as the need to monitor fluid consumption at an appropriate rate.> > In regards to the doctor, perhaps showing him research articles on > the benfits of having an interdisciplinary approach (preop) on > patient outcome may prove to be of help. I don't know about your > hospital but if you have a bariatric committee maybe getting them > involved to empasize the need (legally and morally) for nutrition > evaluation/teaching preop. liability issues always seams to gain > their attention. > good luck!> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Why r u not answering me? Re: use of straws , I do have an article on this (interdisciplinary approach) I just have to see if I can locate it. I used it when developing our program. I'll see if I can dig it up. LIA > Is anyone aware of any research articles that show a benefit to patient> outcomes using an interdisciplinary approach? How would you suggest> emphasizing the need to surgeons, administration, etc ("legally and> morally") for nutrition services?> THanks> > Dillenbeck, RD, CD, CDE> Dept of Health and Nutrition Education> UW-Health> 20 South Park Street Suite 402> Madison, WI 53715> (608) 287-2770-> >>> nutritionnut89@y... 08/25/04 07:18PM >>>> we also do not recommend straws due to the ingesting of air as well > as the need to monitor fluid consumption at an appropriate rate.> > In regards to the doctor, perhaps showing him research articles on > the benfits of having an interdisciplinary approach (preop) on > patient outcome may prove to be of help. I don't know about your > hospital but if you have a bariatric committee maybe getting them > involved to empasize the need (legally and morally) for nutrition > evaluation/teaching preop. liability issues always seams to gain > their attention. > good luck!> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Re: use of straws , I do have an article on this (interdisciplinary approach) I just have to see if I can locate it. I used it when developing our program. I'll see if I can dig it up. LIA > Is anyone aware of any research articles that show a benefit to patient> outcomes using an interdisciplinary approach? How would you suggest> emphasizing the need to surgeons, administration, etc ("legally and> morally") for nutrition services?> THanks> > Dillenbeck, RD, CD, CDE> Dept of Health and Nutrition Education> UW-Health> 20 South Park Street Suite 402> Madison, WI 53715> (608) 287-2770-> >>> nutritionnut89@y... 08/25/04 07:18PM >>>> we also do not recommend straws due to the ingesting of air as well > as the need to monitor fluid consumption at an appropriate rate.> > In regards to the doctor, perhaps showing him research articles on > the benfits of having an interdisciplinary approach (preop) on > patient outcome may prove to be of help. I don't know about your > hospital but if you have a bariatric committee maybe getting them > involved to empasize the need (legally and morally) for nutrition > evaluation/teaching preop. liability issues always seams to gain > their attention. > good luck!> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Sorry wrong post. Re: use of straws , I do have an article on this (interdisciplinary approach) I just have to see if I can locate it. I used it when developing our program. I'll see if I can dig it up. LIA > Is anyone aware of any research articles that show a benefit to patient> outcomes using an interdisciplinary approach? How would you suggest> emphasizing the need to surgeons, administration, etc ("legally and> morally") for nutrition services?> THanks> > Dillenbeck, RD, CD, CDE> Dept of Health and Nutrition Education> UW-Health> 20 South Park Street Suite 402> Madison, WI 53715> (608) 287-2770-> >>> nutritionnut89@y... 08/25/04 07:18PM >>>> we also do not recommend straws due to the ingesting of air as well > as the need to monitor fluid consumption at an appropriate rate.> > In regards to the doctor, perhaps showing him research articles on > the benfits of having an interdisciplinary approach (preop) on > patient outcome may prove to be of help. I don't know about your > hospital but if you have a bariatric committee maybe getting them > involved to empasize the need (legally and morally) for nutrition > evaluation/teaching preop. liability issues always seams to gain > their attention. > good luck!> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2004 Report Share Posted August 26, 2004 Hello, I just saw your email re: the article in NEJM. Thanks for bringing this to my attention. We can certainly upload the citation/abstract, but not the full article (copyright issues). Thanks! Parrott, MS, RD, LD BND Co-Moderator of Service. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 I already sent an e-mail to the editor of People, noting the use of the word suffer, how it ruins an otherwise good article, and referencing him to the ARC website page regarding writing and reporting about people with disabilities. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2005 Report Share Posted August 6, 2005 "Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don't give up." Good luck tomorrow and thanks for your courage... Betsy Gibbs Founder TurningPoint for Autism www.turningpoint1.org article Marketplace Autos Classified Ads Real Estate ChicagoJobs.com News Business Entertainment Features Sports Staff Columnists The Beacon News • Crosby The Courier News • E.C. "Mike" Alft • Mike • Betty Brown • Dave Gathman The Herald News • Sue Baker • Charla Brautigam • Cain • Mohra Gavankar • Jan Larsen • Pelkie • Nick Reiher • Shooting from the Lip • Ted Slowik • Kris Stadalsky • Leena Trivedi • Whiteside The News Sun • Judy Masterson • Dan Moran • Odie Pahl • Selle • Jim Zegar Community Columnists The Batavia Sun • Tom Parisi The Bolingbrook Sun • Toni Greathouse The Downers Grove Sun • Kimmons Bacote • Elaine The Fox Valley Sun • Judy Buchenot The Geneva Sun • Rick Holinger The Glen Ellyn Sun • Sandy s The Homer Sun • Dave Drown The Lincoln-Way Sun • Hanson The Lisle Sun • Barbara Green The Naperville Sun • Joni Hirsch Blackman • Colt Foutz • Josh Larsen • Bill Mego • Snyder • Tim West The Plainfield Sun • Frick Carlman • Tom The St. Sun • Joani The Wheaton Sun • vsky Other Topics Business • Malcolm Berko • Rob Larson Computing • Matt Cappellini Lifestyles • Dear Abby • Dr. Gott • Morelli Sports • Todd M. • • Alan Ferguson • Bob Maciulis • Mike Nadel Other Opinions Local Opinions • The Beacon News • The Courier News • The Herald News • The News Sun • The Naperville Sun OpenLine / SpeakOut • The Beacon News • The Courier News • The Herald News Site Tools About Our Site Advertiser Index Privacy Policy Search Terms of Use Let's keep an eye on government's medication policy The year was 1953. In the West German laboratories of the Grunenthal Pharmaceutical Co., scientists were working on a synthetic drug to help combat sleeplessness and morning sickness in pregnant women. After four years of testing — testing that was conducted only on animals, and even those tests were suspect — the new drug with trade names like Talimol, Kevadon, Nibrol, Sedimide, Quietoplex, Contergan and Neurosedyn was being marketed in over 50 countries, including Canada and Great Britain. In 1960, Grunenthal applied for approval to sell its drug in the United States. The Food and Drug Administration asked for, but did not receive, adequate (for the time) lab test results from the company or any of its affiliates. In fact, it was later found at trial that lab tests were either falsified or never performed, but we're getting ahead of ourselves. Before the FDA could rule on the application for approval, reports out of Europe began growing with alarming frequency. Women who had been taking the drug to prevent morning sickness were delivering children with birth defects such as shortened or missing limbs and fingers. According to statistics of the time, around 15,000 fetuses were damaged by the drug, 12,000 children were born with deformities and only 8,000 lived past the first year. As the number of cases grew, the drug was officially banned worldwide before ever being approved in the United States. The FDA's reviewer, Frances Kelsey, was hailed as a hero for not allowing the drug to be approved here due to what she called inadequate testing. The drug, as anyone over the age of 50 will tell you, was thalidomide. But I want you to think about that number — 15,000 children worldwide over a four-year period. Last year, approximately 4 million children were born in the United States. Of those children, almost 25,000 will be diagnosed with some form of autism. That's one in every 166 births. This diagnosis rate has been growing over the years, and the same FDA, and now the Centers for Disease Control and Institute of Medicine, will be darned if they can see any reason for it. As we talked about in this space several weeks ago, some parents have offered a theory. Over the past 30 or so years, young children have been receiving more and more vaccinations each year, some as many as 15 or 20. The parents of some of the children diagnosed with autism have discovered that the symptoms their children are exhibiting are strangely similar to the symptoms shown when one is subjected to mercury poisoning. When multiple-batch vaccines are produced by major drug companies like Eli Lilly and Merck, they have been supplemented with thimerasol, a preservative containing ethyl-mercury. Hmm. Still, the FDA, CDC and IOM insist that any number of tests have never found any causal link between thimerasol and autism, and therefore groups like Generation Rescue and others are made up of conspiracy-fueled hysterical parents. But one must listen closely; they have never said they can prove thimerasol DOESN'T cause autism. The truth is, there are potentially billions of dollars in liability on the part of drug companies hanging out there, and this is shaping up to be the classic vs. Goliath story; we the people against the United States federal government. In this case, one of our s is Kirby, author of "Evidence of Harm." Mr. Kirby's book is an exhaustive detail of not only the history of thimerasol and the pathetically little testing in the 1930s that went into thimerasol's development, but is interspersed with the personal stories of parents of autistic children and a litany of government reports, memos, meetings and more dealing with the growing controversy. Until now, Mr. Kirby has been unable to find a broad national audience to debate the findings in his book. This Sunday, Kirby will find that audience as he debates a doctor from the Institute of Medicine on Tim Russert's "Meet The Press" on NBC. Please watch for yourselves and make your own conclusions. Russert is one of the best and will be equally hard on both sides. Please also consider a couple of other facts. If thimerasol was so virtually safe as claimed, why did Sen. Bill Frist in 2002 include a rider in the Homeland Security Act titled the "Eli Lilly Protection Act" to prevent drug companies from liability in this issue? True, it was repealed after a public outcry, but it will be revisited. I mean, it's not that we should ever think our government, which always has our best interests at hand, would ever intentionally harm anyone. But remember thalidomide, which was banned worldwide when it was found to cause birth defects in 15,000 children? The FDA, our FDA, quietly approved thalidomide in 1998, with restricted access, for the treatment of symptoms associated with leprosy. Since 2001, it has also been in trials for HIV anti-inflammatories, prostate cancer, myeloma and Crohn's disease. Still, female users are cautioned not take it if they even think about becoming pregnant, and the FDA warns not to buy thalidomide over the Internet, as they can't guarantee its safe manufacture. Funny, there's a growing body of the public that doesn't think the FDA can guarantee the safe manufacture of anything anymore. Except, of course, vaccines with thimerasol. Questions or comments? Please contact Dave via davedrown@.... 8/3/05 DAVE DROWN • Write to Dave...• Homer Sun columnists• SCNmedia columnists PAST COLUMNS • Let's keep an eye on government's medication policy • Summer vacations can be a real trip • Stating the obvious a hobby for some groups in this country • Softball brings back memories while it offers new perspectives CONTACT US At the newspaper:•Contact one of our editorial staff members•Send a letter to the editor for publication•Send a news release•Subscribe to the paper•Place a classified ad•Contact the customer service department•Get information about advertising in the paper At the Web site:•Ask questions and get answers about the site•Provide a tip about breaking news•Subscribe to our free daily headlines e-mail•Get information about advertising on the site ADVERTISERS Jobst Compression StockingsLas Vegas TicketsAthletic Braces & Supports, Wheelchair Cushions & Ortho pillowsPlace your site here - click here for more info SuburbanChicagoNews.com — © Digital Chicago & Hollinger International Inc. 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