Tuesday, August 25, 2009

The Truth About Rheumatoid Arthritis Will Be Told!

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 RA’ers.

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.)

Links:
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)
Will the Real Rheumatoid Arthritis Please Stand Up (re: mythical RA)
One Month Birthday (where my original goals are listed)

10 comments:

Lisa Emrich said...

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.

Robin said...

GOOD JOB!!!!

Kelly said...

Thanks Lisa and Robin!
I know when we speak up, we represent lots of others, too.
Together, we will move this thing forward...

tharr said...

You may just be one blogger, but you are truly an RA Warrior! Thanks for standing up for all of us.

Terry

MissDazey said...

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.

Sara said...

Go you!!!!!!!!!!!!! That's awesome.

warmsocks said...

Way to go!

Kelly said...

Thanks, guys.
You are so cool. Like Liz said in her comment (FB), there are more of us... so we WILL be heard.

Noelle said...

Yahoo!!! Way to go!

jamie said...

Kelly, thank you so much for being the voice of many.