Guest guest Posted June 20, 2001 Report Share Posted June 20, 2001 and gang... I hope this finds everyone doing ok and smilin'. I know this disease can be a tough battle and I also get so frustrated to see those commercials and ads! Not to be mean BUT I wish they would show Nolan on a bad day of flares trying to catch and pitch that baseball! My efforts to spread the word KIDS GET ARTHRITIS TOO have been good but not good enough. My question to everyone is what can we do as group to change the image society has of arthritis. I am confident if WE speak loud and clear (and painfully honest) we can be heard but I am not even sure where to begin. If anyone is working on this or has ideas please forward them. My support group in KY is more than willing to help!!! Donna Fox, Volunteer Arthritis Foundation - KY Chapter FACES Young Adult & Childrens Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2001 Report Share Posted June 20, 2001 Hey, Donna - Just an idea - The heck with Nolan , they can show a commercial with my son catching in the midst of a flare. Show how hard it is to get up and down and swing that bat but how he keeps going.Even got a triple in his last game! LOL Put all of our child athletes, etc. who soldier on with this disease in their ads. Seriously, I have found that whenever anyone will listen I inform them as much as possible about what JRA is. Just yesterday, for example, went for his blood work and the registration clerk did not know what that diagnosis was when she read it on the order. So I sat and explained. She thought it was only hereditary and I said no it can just happen for many reasons. I left her better informed. I think that is a good way to begin the informing of others - be open to their questions. Michele Re:commercials and media and gang... I hope this finds everyone doing ok and smilin'. I know this disease can be a tough battle and I also get so frustrated to see those commercials and ads! Not to be mean BUT I wish they would show Nolan on a bad day of flares trying to catch and pitch that baseball! My efforts to spread the word KIDS GET ARTHRITIS TOO have been good but not good enough. My question to everyone is what can we do as group to change the image society has of arthritis. I am confident if WE speak loud and clear (and painfully honest) we can be heard but I am not even sure where to begin. If anyone is working on this or has ideas please forward them. My support group in KY is more than willing to help!!! Donna Fox, Volunteer Arthritis Foundation - KY Chapter FACES Young Adult & Childrens Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2001 Report Share Posted June 20, 2001 Donna and here is the e-mail address to the White House president@... Flood their mailbox! And also send, hard copy letters as well In care of: W. Bush 1600 Pennsylvania Ave Washington DC And address it in BIG RED LETTERS use red markers or crayons! I don't remember the zip code. That's one course of action we need to do hare in the states, as well as write the head of the TV networks, and flood them as well! I know I may sound like a bit of an extremist, but not when it comes to this issue! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2001 Report Share Posted June 20, 2001 In a message dated 06/20/2001 7:28:43 AM Pacific Daylight Time, faces1999@... writes: > My efforts to spread the word KIDS > GET ARTHRITIS TOO have been good but not good enough. My question to > everyone > is what can we do as group to change the image society has of arthritis. I > am > Why not contact some of the TV shows. Montel, Maury Povitch....They often do programs on kids with disease Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2001 Report Share Posted June 20, 2001 ALSO ANOTHER GOOD REASON FOR GETTING OUR MESSAGES OUT ABOUT JRA IS SCHOOL OFFICIALS..TABITHAS SCHOOL FOLDER HAS PAMPHLETS IN IT ON JRA. THE GUIDANCE COUNSELORS HAVE NEVER EVEN OPENED THEM UP AND READ ANYTHING ON THE JRA. SHE IS IN HIGH SCHOOL AND YOU WOULD FIGURE THE SCHOOL WOULD WANT TO READ UP ON THE JRA. MAYBE TEACHERS, PRINCIPALS, ETC. WILL FINALLY BE AWARE OF JRA IF COMMERCIALS AND MEDIA ADVERTISE..BEFORE THE NEW STUDENTS START SCHOOL......KAREN Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2001 Report Share Posted June 21, 2001 I don't want to be a negative here ... but as the juvenile arthritis awareness week approached this year.. I took it upon myself to e-mail my local media here .. as well as several " national " talk shows and morning shows. I explained briefly to them about JRA and getting the word out. Unfortunately I never got not one reply!! Who knows maybe if we all gang up on them we can get some attention. Seems to me that even in this small forum,everyweek we have new people who's children are just being diagnosed. I do believe that together we can make a difference & maybe it needs to start here. I know in my area there is no support group or foundation chapter for kids with arthritis ..so maybe it has to start here! Sorry if I've rambled on just had to get this off my chest... Kris (Ashton poly jra) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2001 Report Share Posted June 22, 2001 i took the JRA pamplets to every person in s school and said IF you want to know about s problem you will read it i THINK 2 out of 10 read it Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2001 Report Share Posted June 22, 2001 robbin...isn't that crazy!!!!!!! i mean i understand the educational field doesn't get paid like they should...but it is so sad that people who go to college to go into these careers..don't even take the time out to read upon a disease that affects so many children in this world....it is such a sad, sad, thing...karen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2001 Report Share Posted June 23, 2001 Your so right i think its not to interesting for our TEACHERS that his or her student has any disease I have always thought that a TEACHER teaches BUT also gets involved with the student LEARNING along with teaching the other students about different things Teachers have OUR kids 8 hours out of each day what alot of time to spend with a child BUT it would or could be very interesting to the other children to uncerstand whats going on with their classmate ALSO a learning experience for the class SCIENCE and MATH and READING oh and the old BIOLOGY class also lololol i find that what i learned in school even though at the time i didnt think i would need to learn it i use it everyday did a project on AIDS and got a A+ on it this was in the 7th grade we went to the health dept and other places to get info these health officals said i was doing the right thing with bringing her to the health dept and letting her understand this disease BUT i also told them she could have done the project on herself and JRA they told me that theres not much info on JRA at that time AIDS was found in the 80s JRA has been around alot longer i think and its still not getting the public awareness as it should be still so many unanswered questions for us parents but with our voices we should get the awareness out also look at cancer when i was growing up it was tabo to talk about it IT took the women to take a stand to this disease and now the rate is remarkable if caught in time this also benefitted the male counterpart they also have breast cancer amazing SPEAK UP SPEAK OUT SPEAK LOUD >>>KIDS GET ARTHRITIS TOO<<< I am going to call the CDC and see what they are doing about the rate of children getting JRA and see how the process is to get some action in the medical field to get more awareness to this We are doing great with the emails going to the media talk shows each week send one to Oprah show hopefully it will get read Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2001 Report Share Posted June 23, 2001 , My Great Grandfather who passed away in the late 70's at the age of 80 something, had juvenile rheumatoid arthritis, yet it was never diagnosed or named as that. After years of doctor visits for my own daughter, current rheumatologists concluded that it had to be. He, as a young boy, walked with a cane because one leg was shorter than the other, and his knuckles wrists and ankles all had the classic nodules of arthritis on them. It was finally diagnosed as rheumatoid arthritis when he was older, but they also concluded that it was most likely caused by juvenile arthritis. My Grandpa, who passed away 10 years ago at the ago of 78, also had juvenile arthritis and by the time he was 20, had both knees replaced, but again, they didn't treat him for that when he was young. 2 very good examples of what you are talking about. Angie Re: Re:commercials and media > >Oh certainly, Arthritis has affecting children,for more years than we've >been alive. It just was until the twentieth century that they really >started to recognize it for what it is. >A child that would develop joint stiffness or pain, would often times be >told, 'oh its nothing, just growing pains'. And be given an aspirin for >the sore joints. >It would be interesting, to Really Know! just how many, children have >suffered from the ravages of JRA, before the medical community finally >came to, except it for what it really is. >All to often people, will turn a blind eye to the facts placed right >before them. Usually a comment like oh, that's ridiculous, that don't >happen or how can that be. >But by continually put out the word, that it does and it is, it will make >a difference. >So keep the letters flowing and we will make a difference! >At least, an awareness!! > > A. Morse >Living with JRA for 33 years! > >To manage your subscription settings, please visit: > > >For links to websites about JRA: >http://www.geocities.com/Heartland/Village/8414/Links.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2001 Report Share Posted June 23, 2001 Oh certainly, Arthritis has affecting children,for more years than we've been alive. It just was until the twentieth century that they really started to recognize it for what it is. A child that would develop joint stiffness or pain, would often times be told, 'oh its nothing, just growing pains'. And be given an aspirin for the sore joints. It would be interesting, to Really Know! just how many, children have suffered from the ravages of JRA, before the medical community finally came to, except it for what it really is. All to often people, will turn a blind eye to the facts placed right before them. Usually a comment like oh, that's ridiculous, that don't happen or how can that be. But by continually put out the word, that it does and it is, it will make a difference. So keep the letters flowing and we will make a difference! At least, an awareness!! A. Morse Living with JRA for 33 years! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2001 Report Share Posted June 23, 2001 Excellent Example's ! And Unfortunately, we will continue to see misdiagnoses, until the medical community comes to a acceptance. And doctors who don't dismiss their patients knowledge, concerning their own body. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2001 Report Share Posted June 29, 2001 Hi and , I agree, completely. These days though, I have noticed that a few of the arthritis med commercials actually do have children in them. Probably supposed to be the grandchildren of those affected by arthritis but ... you never know And about spreading the word and teaching people about juvenile arthritis; like that old shampoo commercial from many years ago, you tell two friends and they tell two friends, and so on and so on .... I, too, never knew that kids could get arthritis ... until my own son got sick. And he was seriously sick. Nothing at all like the 'minor aches and pains of arthritis' they tend to advertise about on TV. I think being able to inform as many people as we can, in a personal manner, is doing a great service. The more informed people are, the better the chances that it will be taken seriously and once this kind of knowledge trickles down to the right people, like the ones that Donna and others meet with on Capital Hill, the better the chances that adequate monies will be allocated for further research. Take care, Georgina srargem35@... wrote: dear group..i would like to know if anyone has noticed that on tv commercials that advertise about meds for arthritis..only show adults..i think if they would advertise about children also..the message would get out more that children suffer with arthritis..then when a parent finds out their son/daughter has this..there wouldn't be so much confusion to go along with the knowledge that your child has something that an adult usually gets. i never even heard of jra until tabitha was diagnosed with this back in 1989..so many people tried to say it was my fault she had gotten this..because like i said nobody really knows about jra unless they have to deal with it.....well good luck to all and take care...........karen " Tepper, Michele " wrote: > > Hey, Donna - Just an idea - The heck with Nolan , they can show a > commercial with my son catching in the midst of a flare. Show how hard it is > to get up and down and swing that bat but how he keeps going.Even got a > triple in his last game! LOL Put all of our child athletes, etc. who soldier > on with this disease in their ads. Seriously, I have found that whenever > anyone will listen I inform them as much as possible about what JRA is. Just > yesterday, for example, went for his blood work and the registration > clerk did not know what that diagnosis was when she read it on the order. So > I sat and explained. She thought it was only hereditary and I said no it can > just happen for many reasons. I left her better informed. I think that is a > good way to begin the informing of others - be open to their questions. > Michele Quote Link to comment Share on other sites More sharing options...
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