Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 You know, I had hoped the group was more general that this: The International Still's Disease Foundation is an established non profit organization dedicated to bringing awareness, support and information to the public , families and it's group members about Adult Onset Still's Disease. An adult onset of systemic juvenile rheumatoid arthritis. I think it's depressing that a group that's supposed to help those stricken with a debilitating disease is so narrow minded. It's like having a support group for those with HIV but only supporting those with AIDs. It's repulsive. I guess I'm lucky I'm not a kid anymore. But that doesn't make me any less...upset. You guys should be a bit more open with the sufferers of this un-impartial disease. It's, and correct me if I'm wrong here, The International Still's Disease Foundation, and not The International Adult Onset Still's Foundation. So don't you think we, as a support group, should be a bit more towards everyone with Still's and not just the adults? Come on, guys read your own website. With the evidence in the responses to my sJRA post last week, as they were beyond pitiful, I think this isn't something that cannot be ignored. I know the group is made up of those with AOSD but that doesn't mean we can't bring about awareness for both forms. Every piece of 'literature', namely The Merck Manual of Medical Information, I've come across names Still's as a childhood disease with adult onset cases and not the other way 'round. I'm not saying screw the adults, 'cause that's a bit overdramatic, I'm saying think of the kids that don't think about speaking up. Children don't have the luxaries many adults'd take for granted. Children don't even get pain medicine as many of you discuss which and what you've been on and are currently on. This is serious, and it cannot be pushed aside as you've done before with me. I'm just saying think of the kids. : ) I don't want to be crippled and cracked Shoulders, wrists, knees and back Ground to dust and ash Crawling on all fours When you've got to feel it in your bones - ¡Bones¢ Radiohead Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 , I can't speak for " the board " either, but I've always thought of this site as a place for adults who have either AOSD or sJRA or their spouses or their family members or really anyone who is interested. We also have members who are parents of children with sJRA. (, correct me if I'm wrong--did someone change the homepage of the website to Adult Onset? Shouldn't it just say " Still's " ?) But you're right, the dialogue is mainly adult in nature. There are some great sites that cater to kids/teens with JRA or sJRA/Still's. CreakyJoints.org is a good one. Or the Arthritis foundation's message board (go to http://www.arthritis.org/arthritis-answers.php then click on message boards). The Arthritis foundation message board has great sub-threads, including a Young Adult one. If you read enough of the posts here, you'll find this is a very caring, INCLUSIVE group of people. I'd guess that almost half of the members are adults who have sJRA/Still's and who have spent a lifetime dealing with it; almost another half have adult onset still's; and another small percentage have some odd mix of related illness. And since I was one of the people who posted a " lame " response to your post last week, maybe it would help to know that I work full time, I take care of my home, I do volunteer work, I'm in a lot of pain a lot of the time, and when I have the luxury of an hour or so to read and respond to posts on this message board, I don't always know their full context, so I apologize if I missed the point or question of your post. I thought you were creating a dialogue about the differences and similarities between sJRA and AOSD. in Maine > I think it's depressing that a group that's supposed to help those stricken with a debilitating disease is so narrow minded. It's like having a support group for those with HIV but only supporting those with AIDs. It's repulsive. I guess I'm lucky I'm not a kid anymore. But that doesn't make me any less...upset. You guys should be a bit more open with the sufferers of this un-impartial disease. It's, and correct me if I'm wrong here, The International Still's Disease Foundation, and not The International Adult Onset Still's Foundation. So don't you think we, as a support group, should be a bit more towards everyone with Still's and not just the adults? Come on, guys read your own website. With the evidence in the responses to my sJRA post last week, as they were beyond pitiful, I think this isn't something that cannot be ignored. I know the group is made up of those with AOSD but that doesn't mean we can't bring about > awareness for both forms. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 Dear , I don't know how you do it all, but my congratulations to YOU! Over here in Europe they use the Latin name for disease, " Morbus " . So I guess for our international posters " Adult Onset Morbus Still " (not Still's) would also be acceptable. Cort --- wrote: > , I can't speak for " the board " either, but > I've always thought > of this site as a place for adults who have either > AOSD or sJRA or (Truncated) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 How do you say ass hole in latin Cort? Just wondering. Brett Re: Re: Again?! Really?! Recent Activity a.. 7New Members Visit Your Group Meditation and Lovingkindness A Yahoo! Group to share and learn. Yahoo! Health Heartburn or Worse What symptoms are most serious? Share Photos Put your favorite photos and more online. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2008 Report Share Posted May 23, 2008 Dear Still's Committee: How can you allow Brett to post this type of language?! I really find this kind of barbaric profanity completely uncalled for. Isn't this kind of language proscribed by your posting rules? If you allow Brett to post profanities then you will open the door to others and discourage many from both reading and posting to this site. What action, if any, will you take here? Cort --- Brett wrote: > How do you say ass hole in latin Cort? Just > wondering. > > Brett > Re: Re: Again?! Really?! > > > Recent Activity > a.. 7New Members > Visit Your Group > Meditation and > Lovingkindness > > A Yahoo! Group > > to share and learn. > > Yahoo! Health > Heartburn or Worse > > What symptoms > > are most serious? > > Share Photos > Put your favorite > > photos and > > more online. > . > > > [Non-text portions of this message have been > removed] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2008 Report Share Posted May 23, 2008 Just trying to broaden my vocabulary Cort. Re: Re: Again?! Really?! > > > Recent Activity > a.. 7New Members > Visit Your Group > Meditation and > Lovingkindness > > A Yahoo! Group > > to share and learn. > > Yahoo! Health > Heartburn or Worse > > What symptoms > > are most serious? > > Share Photos > Put your favorite > > photos and > > more online. > . > > > [Non-text portions of this message have been > removed] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2008 Report Share Posted May 23, 2008 Sure Brett, Well then you'll be happy to know that there are free Latin lessons available on the internet at: www.classicalfree.org/tgc_lai.asp, but I doubt if you'll find an exact cognate, even in vulgar Latin. Advise you take out your Still's frustrations elsewhere than here! cJ --- Brett wrote: > Just trying to broaden my vocabulary Cort. > Re: Re: Again?! > Really?! > > > > > > Recent Activity > > a.. 7New Members > > Visit Your Group > > Meditation and > > Lovingkindness > > > > A Yahoo! Group > > > > to share and learn. > > > > Yahoo! Health > > Heartburn or Worse > > > > What symptoms > > > > are most serious? > > > > Share Photos > > Put your favorite > > > > photos and > > > > more online. > > . > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > > [Non-text portions of this message have been > removed] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2008 Report Share Posted May 23, 2008 I was told at my Dx that there was stills and then adult onset stills and the two were the same but yet defrant . I do know I found more on child hood stills then I did on AOSD. at the time the redneck Marty The whole of that Bill [of Rights] is a declaration of the right of the people at large or considered as individuals...t establishes some rights of the individual as unalienable and which consequently, no majority has a right to deprive them of. ---Albert Gallatin to , Oct 7, 1789 The great object is that every man be armed " and " everyone who is able may have a gun. " ( Henry, in the Virginia Convention on the ratification of the Constitution. No freeman shall ever be debarred the use of arms. --- Jefferson: 1776 " Waiting periods are only a step. Registration is only a step. The prohibition of private firearms is the goal. " Janet Reno " as United Statesattorney general in the Clintonwhite house (now do we really want Hillary there to?) so what is the truth? what the founding fathers ment, or what people today try to twist it to ? Give up one right and the others will soon fallow Stills ; An illness I know to well! To learn about Stills http://www.stillsdisease.org/stills_info Quote Link to comment Share on other sites More sharing options...
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