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

    1. Nancy Bauer says:

      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……

    2. Donna T says:

      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!

      • 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.

    3. Leigh says:

      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.

      • 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.”

    4. e-Patient Dave says:

      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.

      • We’ll do our own videos! And there’ll be no “what if’s”!! 😀

      • 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.

    5. Ann says:

      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.

    6. Ann says:

      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).

    7. turtlemom3 says:

      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…

    8. Anne says:

      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.

      • 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.

    9. nancy v kaplan says:

      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

    10. Liz says:

      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.

    11. joan smith says:

      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.

    12. Val says:

      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!

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