Dear folks, I wrote to Dr. Phil & to Oprah about our disease and how we feel 'people' , the media, doctors, most everyone is unaware of what we go through. Please, write to them also, tell your story and maybe they will consider doing a show to bring attention to this awful disease. Alieve, does not help!, we need more people to know about the fatigue, the trouble we have even being diagnosed!, the joint erosion, the 'we look well', but we know we arent, the trouble with meds taking so long to 'work', the high cost, the worry about getting employment, health insurance,...... etc. etc. If a lot of people write them, maybe, just maybe they will LISTEN TO US!! It can look like a 'movement'.Thanks, SarahJust sent mine off Hurts...great idea!
just my 2 cents worth, write the letters but keep in mind they get letters like that for just about every disease out there. They both are in the business to make compelling TV shows that people will watch. The "I've got this horrible disease, no one understands, and my life is ruined" is not very good TV. In fact it is down right depressing.
You have to give them an angle that they want to explore. Maybe, the effects of chronic illness on appearance and self esteem, how to dress and look good with physical difficulties, weight loss with arthritis, maybe Oprah and Dr Oz could do a show on why pain is not a part of normal aging and should be examined or a show on auto immune diseases.
Show like Oprah and Dr Phil want stories about people not diseases. They want to leave their viewers with either a positive feeling or a call to action. You have to give them a catch to hook the viewers. Both shows whenever they focus on a disease or disability is showing a person who has succeeded despite their problem
If you want a show that would be more "life with a disease focus" you might have better luck with Dr Sanjay Gupta of CNN whose shows and specials are more on the medical aspects.
Your letters would be more useful sent to your Congressman and Senators.
http://arthritisinsight.com/forum/forum_posts.asp?TID=7834&a mp;PN=1
aw, come on ya all give it a try, thanks, sarah
I'm afraid that Dr. Phil and Oprah just aren't the right match for what you're looking for Sarah. I think it is great to raise awareness about RA, and about the difficulties faced by those who suffer from it, but they just aren't the right format for the desired results. Perhaps if someone who is in fear that their marriage is about to end because of the impact that RA has had on it wrote to Dr. Phil he would consider it, but other than that I just don't see those two shows as the proper forums.
If it were properly presented to 20/20, tying in the recent statistics about the number of baby boomers who have or will have arthritis in the coming years, and the social and economic needs that have arisen because of it, you might generate some interest in an in depth report.
Montel Williams might also consider a show about these issues, since he suffers from MS.
Otherwise, I must agree with Lovie - we need to make our state and local representatives aware of the issues surrounding RA and other arthritis conditions, and force them to deal with the inadequacies of Social Security and the need to fund research for better treatments and/or a cure.
AT LEAST GUYS YOU HAVE OPRAH AND DR. PHIL...I DONT! HEHEHEH
SO...I DID MY PART TALKING TO A JOURNALIST IN THE LOCAL NEWSPAPER AND IT WAS A GREAT MOVEMENT FOR A WHILE...I COULD GET SOME SUPPORT FROM RE DOCTORS TO DIAGNOSIS PEOPLE FOR FREE FOR 1 MONTH BUT FROM THE GOVERNMENT...NOTHING
ONE STEP AT THE TIME
SEE YOU SARAH! I HOPE YOU CAN MAKE IT ...IF YOU NEED MY LETTER TO OPRAH OR DR PHIL FROM ARGENTINA...JUST TELL ME
This has been done before. Wayney from one of the other boards wrote to Oprah, Dr. Phil, Montel, etc. and several others followed in her footsteps and absolutely nothing happened.When I watch Oprah and Dr. Phil, i get the feeling they have unlimited resources, and that if we write them , who knows? , they could pass on 'our story' to someone important to our cause....couldn't hurt. Please write them and tell your story.
Thanks, Sarah
They do have unlimited resources. However, I have to agree with most here that this is just not a right fit with what they are looking for. Our letters are better off going to local reps or congress.
I agree Gram. A letter to your Congressman (Remember to Cc his campaign office) will definately get you better more useful results.
It's like I was saying before in the Arthritis Bill thread. There isn't a person alive that doesn't at least know someone with Arthritis. 90% of us have someone in our family that is affected by arthritis (Maybe not RA) in some way or another. Getting your Congressman/Senator to sign on to this bill will lead to contiuned research that may one day lead to better medications.....better treatment options.....maybe even a cure. This being an improtant election cycle no politician will want to go against anything that will affect so many of their voters. Anything that benifits Arthritis in general will benifit those of us with RA. I know people don't want to be grouped in with those with "Regular Arthritis" but this is one of the times when it's in our best interest to piggie back through this cause together.
I'm not big into attention and don't care one way or the other if Oprah shows sympathy toward our illness or not. Even if she did a show on the common person and showed their daily struggles; what do you hope to accomplish? It's doubtful that anything would change. The word arthritis still brings up images of everyones 80 year old Grandmother with bad knees. Yes; that's arthritis.....but it's not the same as RA (Although simular). Why is it so improtant to so many that everyone understand what they are going through. Do you think RA is the only disease that is misunderstood? I'm certain it's not.
It doesn't bother me one bit that Aleve works well for an arthritic knee but does nothing for RA. Those commercials don't bother me; and Aleve does work well for many people (Although it's hell on a stomach!) Arthritis is a huge problem for many. Yes; it's different from RA......but it's a horrible thing for millions that have it.
Sorry. Don't mean to rant....but I never have understood this whole contact the media craze. I've seen many members try to start a letter writing campaign since I've been members at these forums; and I just don't see the point.
Another place to look at to raise awareness is your own backyard. Become involved in your area Arthritis Foundation and other groups. Many groups have weekly, monthly meetings and are always looking for speakers. Talk to a local newspaper columnist or tv reporter. You are far more likely to get a respone locally than you are nationally.
NOt only write to your Federal representatives but also those at the state level. Many programs are controlled at that level.
The Susan B Koman Foundation for breast cancer started with 2 women. They built it locally before going big. Take the opportunity to educate those in your circle and then start looking to see how you can expand that circle
I guess I am wondering what you are envisioning happening Sarah. When you picture the Oprah or Dr. Phil show, if it came about, what would the topics be, what would your desired result be? Are you trying to get more funding for research, are you addressing the issues surrounding employment and disability or healthcare, - what would be your focus and what do you wish to achieve? We haven't really given you the opportunity to fully explain what your goal with this would be.
PS Buckeye makes a great point about working on the local level - that's an excellent idea.
thanks for asking, I'm mostly wanting to draw attention to all of the things you all have taught me on this forum. I'm not alone in feeling this disease is not well understood, what we go through to be dxed, how the pain, swelling, stiffness comes and goes all over our bodies, how it affects our family life!, (prednisone messes with your sex life even...)the meds and what we must worry about taking them...not taking them. I'll write more later, but here's a beginning. love, Sarah
As I mentioned some where above, I think they (O * Dr Phil) have unlimited resources, so if they get interested in our particular disease they can surely pass it on to people who can help us.
I find it disturbing that Aleve, manufacture would just say, 'take this for artritis, and you are 'so much better', Huh?! as we know that doesn't work for us.
I'd like to see more research into why some of us get this and why some don't. Do more women suffer from this? If so why. Our children may inherit this! ,
What about this 'we look okay' some of us don't have the signs of problems with out hands other's do. We can walk, normally, without limping....other's can't, etc. So, when we are looked at funny when we have the disabled sticker on our cars and park in the parking spaces....someone needs to point out we are't well!
Please, feel free to add things I'm not thinking of, I'm not feeling so good right now and need to chill out.
thanks, for asking Hillhoney, you've been so helpful to me since I first joined this forum. love, Sarah
Sarah..just to fill out the discussion. I know RA/arthritis is near and dear to our hearts but to make compelling television how are the topics you listed different for RA than any other chronic illness. In my opinion they really aren't which makes for tough TV.
This is Arthritis Awareness Month..call the health editor of you local paper and ask what reporting will be done on arthritis this month. Do the same with your local tv stations. It will be interesting to see what results you get
"As I mentioned some where above, I think they (O * Dr Phil) have unlimited resources, so if they get interested in our particular disease they can surely pass it on to people who can help us."
They get hundreds of thousands e-mails and letters each day. I'm sorry but the problems from and soociated with RA are not unique. Someone with MS can write the same letter you can just changing the name of the disease. As long as you focus your communication on "this diesase is bad and misunderstood" you will fail to acheive your goal.
You specifically mentioned Aleve...have you contacted the manufacturer about your issues?
Maybe Oprah could be interested in a weight loss show tittled 'How do you lose weight on pred?' or Maybe 'Weight Control through Exercise when 50 steps is a Marathon'.
Maybe I'm selling her short. She's pitched in and helped many times before...