An Absolutely Vile Disease, the “a” Word, & New RA Animated Video | Rheumatoid Arthritis Warrior

An Absolutely Vile Disease, the “a” Word, & New RA Animated Video

RA Veterans animated video

RA Veterans animated videoLast year, I got a call from a woman named Courtney floating a trial balloon on creating an animated video for RA patients. After some discussion, I agreed it could be interesting, but with a few “ifs” like if it’s positive, honest and realistic, and if its not insulting to patients. Courtney’s company was hired by Genentech (maker of Actemra and Rituxan) to create the video, and she came up with a draft script, based on our discussion. There were more phone calls, sometimes tense, as I corrected stereotypes and misconceptions that could offend patients – the way most advertisements do.

There were more editing emails and phone calls, and eventually – a final script. And then an audio engineer came to my house to record my reading. And today, I can show you the finished video. Watch the RA Veterans animated video below More information about the RAise Your Voice video series is on the RheumatoidArthritis.com website.

Why would we celebrate the inadequate “a” word?

This week, I smiled as I read my friend Elizabeth’s notes for her part in our session at the ACR Oct 29th. I was both startled and delighted to read: “This is an absolutely vile disease.” Maybe that’s how y’all feel sometimes reading my blog – it was a serious document – but I felt validated. Yes, it is a vile disease. Elizabeth’s frankness is refreshing and if we lived in the same city, I’m sure we could get into a lot of trouble together. She has a gentle Georgia drawl and unique insight into medicine, having played different roles in her life: PRD, clinician, and caregiver (her mother had RD).

Anyway, Elizabeth is right – RD is awful and insidious. Its most well known symptom is joint inflammation or “arthritis.” But Rheumatoid is not really a type of arthritis, so as I wrote back in October 2010 (see below for the fascinating history of World Arthritis Day on RAW), it doesn’t have much to do with World Arthritis Day. The day may actually be counter-productive, confusing people about what RD really is – it is a vile disease.

RHEUMATOID DISEASE DOES HAVE A DAY!

Shout it from the rooftops. RHEUMATOID AWARENESS DAY, FEBRUARY 2, is our day! A day to educate and overcome confusion. I hope you’ll get involved in bringing RD awareness to your community or country. Meanwhile be sure to subscribe to the RPF blog so you don’t miss any news.

An interesting journey… read what RAW published each year on World Arthritis Day

2013 – Release of new RA Veterans animated video (below), a RAise Your Voice video from Genentech

2012 – Never Mind! 3 Lessons for Evidence-based Medicine and RA, a very important post, but essentially ignoring both Columbus and the “a” word

2011 – Happy Birthday #Rheum for World Arthritis Day, explaining why I created “#rheum” as a hashtag and how it has benefited rheumatology patients and others. (By the way now that hashtags are spreading from Twitter, did you notice it on Facebook?)

2010 – Twitter & a #rheum for the Rheumatoid Online Community, the post which created the hashtag “#rheum” to begin a rheumatology community on Twitter, based in part on the #DOC (diabetes online community)

2010 – BUT FIRST… I published What Does World Arthritis Day Have to Do with RA? on October 11 – very fun to read what I was thinking three years ago & see your 57 responses!

2009 – Columbus Day and World Arthritis Day: Is There a Connection? – Part of a series on historical mysteries and diseases that are similar to RD

Recommended reading

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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17 thoughts on “An Absolutely Vile Disease, the “a” Word, & New RA Animated Video

  • October 12, 2013 at 8:14 am
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    The video is great! Again Kelly thanks for all you do (I know I keep repeating myself 🙂 I just had a discussion yesterday with hubby about the word “arthritis”…he had gone to his dr as some of his joints were feeling sore and I suggested he get a Lymes test as he is out in the woods a lot. The results came back yesterday in the mail as negative (thankfully) and his sed rate was normal (thankfully) and the NP made a note that it was “just arthritis”…I mentioned to him this is why that word needs to be taken out of the description of our disease…he just looked at me like I was nutty…after 4 years you think he would know better……

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  • October 12, 2013 at 8:56 am
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    I hear the same type of responses as Nancy mentioned. Arthritis needs to be removed from our disease description.

    I really like the video and would like to see it on TV in the place of some of the drug ads. However, I am curious why the doctor’s description does not include something about the disease being systemic. He mentions a ‘serious condition that attacks joint tissue causing painful, chronic inflammation and irreversible destruction of cartilage, tendons and bones’, but there is no mention on the many systemic aspects of the disease.

    I have to admit that even with the comments made to me personally, like it’s “just arthritis”, I was shocked to recently host a table for arthritis at a local health fair. Only those who told me they had RD knew anything about the disease. I had made some little table tents to go along with brochures that were provided. One mentioned 100 forms of arthritis, one said RD was systemic and another about children getting arthritis. I would point to the info and every person responded “I didn’t know that.”

    The whole issue for lack of understanding and education concerning this disease was again magnified at a committee discussion for the local “Walk”. Significantly lower donations and support for arthritis compared to fundraising for other diseases signify, to me, a serious lack of understanding and education about this disease.

    Thanks for your continued GREAT work on our behalf!

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    • October 12, 2013 at 9:39 am
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      Good point about only arthritis being discussed. It’s important to remember that the video was funded by Genentech, and while I was allowed to have input that I do think improved its relevance to patients – It is not a RAW or RPF video, and not exactly as I’d have made it if I were in charge. I still wanted to share it with you.

      Some very positive points in the video include the doc handing a book to a patient, and patients holding hands with a doc at the end. This pictures partnerships with patients who are engaged in learning about their condition. Be engaged is a main theme of the video, and I support that of course. In light of the discussion we began the other day here about whether patients should be learning & discussing medical topics, it’s a good example from a pharma company of seeing the patient role properly.

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  • October 12, 2013 at 9:54 am
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    I liked the video. I don’t love animation and thought it would be silly, but I actually was impressed with it. Sure, it’s not all the things we’d like to be said, but for how short it was, it was concise and informative. Thanks for always being in the mix Kelly. We appreciate you having our backs.

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    • October 12, 2013 at 10:06 am
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      thanks Leigh. I refuse most “free consultations” now because I’m too busy with our own work, and the different types of companies (& other entities) do not have our best interest at heart. I’m pleased with how this turned out – and in large part that is because they stayed committed to that first discussion of “ifs.”

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  • October 12, 2013 at 3:03 pm
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    I wanna know what stereotypes you corrected!!

    I wish you could have gotten them to SAY it’s an auto-immune disease with arthritis as a symptom. Boy do I wish it. Because of YOU.

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    • October 12, 2013 at 4:02 pm
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      We’ll do our own videos! And there’ll be no “what if’s”!! 😀

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    • October 12, 2013 at 8:23 pm
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      It must be my innate tendency to not embarrass anyone – – wondering myself why I left those out – one was to have a patient carrying a basket of laundry up a flight of stairs. And when I threw the ball, I would’ve winced at my hands instead of my shoulder. I changed something about the sock. I know there’s several more if I looked at my notes.

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  • October 12, 2013 at 4:48 pm
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    Wow! Kelly the commercial is very good and the best RA/RD commercial so far. Your talk on patient real experience with RD vs medicines misconceptions is strong and very informative. You are an awesome advocate. I am so sorry we have this rotten disease in common but, I am so thankful you are here fighting for and with us.

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  • October 12, 2013 at 4:52 pm
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    Just to clarify I watched two videos. The commercial and then the one where your are speaking on RD patients experiences vs lab results and non swelling ( physicians ex guides).

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  • October 12, 2013 at 6:14 pm
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    Thanks for the kind words, Kelly! The video was well done, and got a lot said for being so short. I really liked it. Frankly, the best I’ve seen when a BigPharma company is involved.

    In terms of whether “patients should be reading and talking about medical topics,” my response is a resounding, YES! We SHOULD be reading and learning as much as we can about our VILE disease. And once we have learned as much as we possibly can, we need to hold our docs’ feet to the fire and find out what we need for our particular manifestations of this disease.

    The video is a great start – now if the docs would just view it…

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  • October 12, 2013 at 11:27 pm
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    How will the little animated video be used? It is nicely done, and I like that they used real patients and doctors, not hand models.

    The video that came up after made me laugh: there was a snapshot of you with a baby in a backpack. We had that exact same backpack, same color. I wish it had an odometer on it. Between my husband and me, we must have racked up hundreds upon hundreds of miles on that thing with one of our three in it! I couldn’t even begin to hike now, with or without a baby in a backpack.

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    • October 13, 2013 at 1:04 am
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      I think it is to promote their website. Most of the pharma companies create sites where they hope patients will come and spend time – it’s kind of PR to build reputation. Much of it is actually competition for sites RAW where patients are communicating.

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  • October 14, 2013 at 11:54 pm
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    Dear kelly,

    where or how do you manage to get so much accomplished with this health nightmare?
    Thankyou for your work. the word vile is a good adjective for RD.

    nvk

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  • November 24, 2013 at 7:22 am
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    I totally agree about the lack of mention about RA/RD being systemic. This is a critical aspect of this disease and is one of the most least known aspects of the ongoing threat we live with.
    I realise you were not the creator of this clip Kelly, but I do feel that this not being mentioned as a basic component of the symptoms of RA/RD is one of our biggest hurdles when it comes to educating people about this disease.

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  • April 21, 2014 at 11:17 pm
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    I have recently been diagnosed with rheumatoid arthritis. I’m really scared and I am glad just to have this blog as an outlet. Thank you so much.

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  • October 13, 2014 at 11:34 am
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    Kelly, Welcome back!!!! Thank you for posting!!!!
    I miss the old me. The new me has so many limitations, I’m a warrior so I don’t back down. But I do listen to my body, I have learned to give my body rest. Which I really don’t have much choice. I’m proud that you stepped back to do the same for you & your family!!! Blessing to you & your family!

    Reply
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