The Truth About Rheumatoid Arthritis Info Will Be Told!

truth about rheumatoid arthritisHere’s the story:

I got some good news this week that I know will make you smile, too. Let me back up a bit.

A few weeks back, the company which markets Remicade put up a new website about Rheumatoid Arthritis. It is a video series presented in a “talk show” format. It is highly polished and full of star power. The “host” is Deborah Norville.

When I heard about it, I was eager and excited. A long time ago, I had read that Norville’s mother had died of RA. At one point, I had made an attempt to reach Norville for an interview, but had not gotten a reply.

I hurriedly watched the video segments. However, my enthusiasm burst quicker than a cheap balloon. I sensed the presence of my arch enemy: the mythical RA. I could tell that the script writer did not understand Rheumatoid Arthritis.

To me, the worst video was the one on exercise. You’ll never guess what they called it! Yep you guessed it: “Use It or Lose It.” When I first heard that, it was like the Grinch stole my Christmas.

Here is how I felt:

How can I accomplish my goal of telling the whole world about the real Rheumatoid Arthritis when…

  1. The big money goes into a slick presentation which contradicts what I know to be true?
  2. How can we ever get anyone to listen? I am just one blogger.

However, here is what followed:

  1. I made my opinion of the video known those in charge. I tried to represent “the real RA” and what has been shared with me by so many people.
  2. They listened! Based on my input, they are making changes to the script of the exercise video.

This is what they told me: “The new copy has been adjusted to be more reflective of varying levels of ability for people living with RA.” They sent me examples of the changes.

They even changed the name of the video segment on exercise to “Stay Active at Your own Pace.” And they are taking my conversations with them into consideration as they draft new scripts future video segments. I will keep you up to speed on that.

I know they have a way to go until their site reflects the same brutally accurate version of Rheumatoid Arthritis that you see on Rheumatoid Arthritis Warrior. But, this is a step in the right direction. And, even more important, it is proof that someone is listening.

(Pssst: it’s not a pizza! It’s a monster cookie.)

References
The New Way RA Video Website
My Original Comment on the Videos  (if you want to add a comment on the Johnson and Johnson page, please watch the videos first)

Recommended reading:

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

17 thoughts on “The Truth About Rheumatoid Arthritis Info Will Be Told!

  • August 25, 2009 at 11:06 am
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    Good for you!!

    I know from personal contact that the social media folks at J&J take their outreach seriously. Enough so that they had me give a presentation on blogging and social media from the patient's perspective to their communications people last fall.

    I'm glad that you spoke up.

    Reply
  • August 25, 2009 at 11:27 am
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    Thanks Lisa and Robin!
    I know when we speak up, we represent lots of others, too.
    Together, we will move this thing forward…

    Reply
  • August 25, 2009 at 4:59 pm
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    You may just be one blogger, but you are truly an RA Warrior! Thanks for standing up for all of us.

    Terry

    Reply
  • August 25, 2009 at 9:49 pm
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    You are amazing..keep it up. Do you think that they will add a forum? Or new material? I was thinking when they said talk show format they might have question and answer page.

    Reply
  • August 26, 2009 at 7:05 am
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    Go you!!!!!!!!!!!!! That's awesome.

    Reply
  • August 26, 2009 at 11:12 am
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    Thanks, guys.
    You are so cool. Like Liz said in her comment (FB), there are more of us… so we WILL be heard.

    Reply
  • August 27, 2009 at 1:53 am
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    Kelly, thank you so much for being the voice of many.

    Reply
  • May 18, 2011 at 1:24 pm
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    I just want to say that this is a great start about RA. It is so true that doing anything physical requires recuperation time. Something as simple as getting your blood drawn may require a nap when you return home. I have taken steroids and TNF inhibitors for years and I felt great……the outcome was adrenal and renal disease and early onset of macular degeneration. Now, I’m not 100% sure if these drugs caused it but funny I did not have it before all the trials of different medications which either had me vomiting, diarrhea, severe multiple infections, skin changes, severe hair loss…..to mention a few side effects! In the end I have learned to manage my energy, pace my self, found a great pain management doctor and support from my family. I refuse to take anymore RA drugs that suppresses and screws up my immune system and God knows what else it does. I refuse to take Rituxan because of the potential PML side effect which is not reversible and leaves you brain dead. I’m an RN and I still feel overwhelmed with the information or lack of information. Drug companies just want you to take their drugs…….but until there are safer drugs I won’t take them. Inform your family on how you feel, find a hobby, do your stretches and learn to listen to your body. I con’t tolerate 2 hours shopping only 30 min…..so I limit to 30 minutes. I pace myself otherwise I pay for it physically the next day or sometimes a whole week. If your depressed, which this can easily happen……find an outlet…..think positive as many are worse off than you…….take time to smell the roses and enjoy it…….talk to your doctor…….research what the doctors want to put you on…..make a list of questions and ask them. Personally, I found an outlet of painting which helped my depression and change of lifestyle. Also, try and find alternative ways of doing things. For example I loved walking my dogs but that became to difficult so I use my scooter to walk the dogs. They are tethered to the scooter and love it. They get out and get exercise and I get out and spend time with my dogs. I hope this helps.

    Reply
  • January 28, 2012 at 7:40 pm
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    I am so happy that I found this information about exercise. I was diagnosed about a year and a half ago and I had been exercising prior to my diagnosis. Over the last 8 months I have been progressively getting worse, even with trying new medications. I had noticed that every time I exercised I would have more severe pain and inflammation and so much fatigue. It’s been wipping me out. I thought that I should just push through it. I’ve been feeling so bad about not being able to exercise but I know now that by continuing to exercise I am only hurting myself more. Thanks for all of the great information!

    Reply
    • January 31, 2012 at 8:38 pm
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      Dear Jackie,
      Here’s a link to reply I just wrote to Sheryl which I think really applies to your question too! http://www.rawarrior.com/25-tips-to-manage-rheumatoid-arthritis-fatigue/?show=comments#comment-172492
      I’m sorry to reply late and I hpe you are still reading! Also here’s a link to a list of all the posts about exercise here on the blog: http://www.rawarrior.com/tag/exercise-with-ra/
      This disease has several different patterns it can take – most have the same experience as you with activity making active disease even worse. Finding the right medication that helps to suppress your disease will be key. And when you do, you can work out the balance of rest and exercise to know what makes you feel best and most able to live your life. Like you, I was always a person who excercised a lot and I’d much rather be able. Hopefully we both will get there.

      Reply
  • March 8, 2012 at 2:36 pm
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    (Pssst: it’s not a pizza! It’s a monster cookie.)

    Sorry, it is a pizza. It might be a “fruit pizza” as the mame of the picture indicates, but it is still a pizza.

    fruit_pizza.jpg

    Rob

    P.S. I enjoy your site and I have had serum negative RA for many years.

    Reply
  • May 1, 2013 at 7:28 am
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    I still exercise 6 days a week in a spinning class ETC. I did
    this for the last 20 years. I have been recently diagnosed
    RA. I have been able to continue my program and it has contributed positively to my disease. The pain goes away for
    hours after my work out. I know my lives quality would be drastically reduced if I had to quite. I hope the pain never
    requires me to quite. I have vowed to continue no matter what
    I guess only time will tell. I am keeping my fingers crossed.I have only been diagnosed 6 months ago, even though I believe I had it in my feet muck longer. They had diagnosed the feet as peripheral neuropathy.To end I hope I am one of the lucky ones

    Reply
  • July 5, 2013 at 11:59 am
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    I am going through the hardest time of my life, i was a athlete and a hard worker but i feel RA took that from me, i am hurting my family as they see me in pain where i cant even get off the couch, i sit at the corner and am afraid for the first time in my life, to even go to the bathroom, bad DREAMS as i turn all night, i feel i lost the fight of RA

    Reply
  • September 23, 2013 at 1:47 pm
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    I have had RA for 8 years I am 44. I have taken myself off all my medicine as I didn’t like the side effects. I soak my feet every night in Epson salt. I do yoga 5 times a week and it helps. I can live with a certain amount of pain but I hated how the drugs made me feel. My Dr thinks I am crazy but the yoga is amazing how it helps, some days are really hard for me and my instructors know about my RA and other days are easy. I found the more I exercise the better I feel.

    Reply

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    Thanks for visiting this unique site full of information and encouragement to fight Rheumatoid Disease. You'll find hope, humor, and a helpful online community. I'm Kelly & I'll be glad to show you around if you'll click right here.

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