Steps Toward Understanding Rheumatoid Disease | Rheumatoid Arthritis Warrior

Steps Toward Understanding Rheumatoid Disease

2 Big Announcements

Last month in What is Rheumatoid Arthritis (RA) / Rheumatoid Disease (RD)?, we asked what this disease IS, with 10 things it doesn’t make sense if doctors don’t know. When we truly know what RD is, we can diagnosis it early, treat it successfully, and cure it!

We’re taking steps to support that goal.

1. RAW’s first toolkit for medical professionals is now available – click here. I’ve been asked what patients want doctors to know about RD – this is the best place for them to start.

2. Two abstracts prepared from surveys of this community will be published and presented as posters at this year’s ACR scientific meeting, considering key concepts for understanding the disease. I’ll also be speaking at a session about engaging with patients. You’ll hear more details on the RPF blog in the coming days. Be sure to subscribe.

Anyone have just a touch of RA?

Does anyone say they have “MS in their wrist”? Seriously, a few years ago, a woman in church told me she had RA in her wrist (only). She was in her 60’s and was apparently lucky with only one joint that was obviously bothered by the disease. Actually, she probably didn’t even think of it is as a disease, being so mildly affected. (Eventually, it did spread.)

But mild joint symptoms or arthritis that’s “controlled” by medication is still no guarantee that Rheumatoid Disease is behaving itself. We’ve read stories in our community repeatedly of quiet joint symptoms while the disease wreaks havoc elsewhere in the body. Come to think of it, that’s how it was when my grandfather died suddenly of a first heart event.

Does anyone even say they have diabetes “in their pancreas”? NO. Because no one is confused about what diabetes is; so no one expects its affects to be limited to one part of the body. Likewise with MS or Lupus.

Studying people with Rheumatoid Disease (PRD) carefully, some things become clear

search-button-magnifying-glassAfter diligently studying patients, McCarty concluded in 1966: “Further studies of the relationship between the local and systemic features of rheumatoid disease are badly needed.”[1]

Nearly half a century later, that could undoubtedly be our mantra.

And McCarty recognized that Rheumatoid Disease does not affect everyone the same – that it’s heterogeneous: “Rheumatoid joint inflammation appears to be a sharply localized process that follows a prescribed pattern in each afflicted individual.” Sometimes, it attacks one joint at a time, like in the woman at my church. Or a man may wake up with a first full-body flare, inflaming all tendons at once, making it impossible to move. Or it might affect the eyes first, like with Sandy Blue. Or it can start in dozens of other ways, following patterns described by patients in the tens of thousands of comments on this site.

Whatever we eventually understand about Rheumatoid Disease, there are 2 things I’m certain of now

1. We’ll learn more and faster from listening to patients, the way McCarty did (and many others I studied while writing my book).

2. Arthritis is a symptom of Rheumatoid Disease; it is not the disease.

Recommended reading

FOOTNOTES

1 McCarty DJ, Gatter RA. A study of distal interphalangeal joint tenderness
in rheumatoid arthritis. Arthritis Rheum [Internet]. 1966 Apr [cited 2013 Aug 21];9(2):325-336. Available from: http://onlinelibrary.wiley.com/doi/10.1002/art.1780090208/pdf

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/

12 thoughts on “Steps Toward Understanding Rheumatoid Disease

  • September 30, 2013 at 8:01 am
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    WOW is all I can say Kelly…what an excellent article packed full of facts and new information! I’m making copies to give to my rheumy and GP…thanks once again for your efforts on our behalf! xo

    Reply
    • September 30, 2013 at 10:37 am
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      great Nancy – you’re always on the front edge of things! Make sure you see all 6 pages – I need to make some more links to it so it will be easy to find.
      This has taken months, but it’s just the beginning. I’ll work on getting it into a print resource next year (after we get the book formatted & published).

      Reply
  • September 30, 2013 at 9:03 am
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    Tremendous resource. Now, how do we get this in the hands of medical professionals?

    Also have to take the opportunity to thank you for the incredible work you do on behalf of PRD.

    Reply
    • September 30, 2013 at 10:43 am
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      hi Donna. great topic. I agree with Nancy’s idea to print out pages until I have something published in print. The new book will focus on the disease itself & that will also help improve our care if we get it into the hands of our docs.
      In a way it’s not “fair” that it’s in the hands of patients to get the right info out – but things in life are often that way: they just “are” the way we find them when we get here, not the way we think they should be of course. At this point, patients know the most about this disease because we live with it. What’s amazing is that with this large online community, we’ve been able to compare notes & see we aren’t alone – at the same time have access to tons of research thanks to the internet – and we are getting a clearer picture of the disease.

      Reply
      • September 30, 2013 at 11:26 am
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        Perhaps making a master copy of the toolkit available online that can be downloaded and published locally would be a good idea. I’d like to have a copy with a manuscript cover – giving appropriate recognition to the tremendous work of Kelly, RAW, and the team.

        I can see sending a link to this document to the Canadian Rheumatology Association for distribution as a link on their website and to the many patient associations/agencies.

        I see sending a hard copy to all the rheumatologists in Canada – we only have about 250 of them. I will volunteer to personally work on the distribution of this document Canada-wide when the timing is right.

        Reply
        • September 30, 2013 at 10:53 pm
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          Agree – if we had the information in a .pdf format – it would be easy to download and print copies to distribute; then also include the website address to this page to access all of the various additional links of information. This could be something to hand out right now until a nicer publication could be produced. Pdf files are easy.

          Reply
  • September 30, 2013 at 11:16 am
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    Congratulations on the publication of an OUTSTANDING toolkit !!!!!! The toolkit is professional, accurate, easy to navigate and INVALUABLE in providing accurate and thorough information about RD. Dispelling the myths about RD is a huge undertaking and you’re doing a brilliant job, Kelly and team. THANK YOU !!!!!!

    Reply
  • September 30, 2013 at 12:57 pm
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    Thank you for putting this toolbox together. I am scheduled to see my Internist this week to discuss her role in my care. I know this will give us both a full list of items to be sure that we are watching.
    It also gives me an objective way to measure the care that I am getting from my Rheumatologist.

    I appreciate this work you are doing so much. Thank you from the bottom of my heart.

    Reply
  • September 30, 2013 at 1:03 pm
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    I was caught by the anecdote about the lady with RA only in her wrist. My FIL related to me a few years ago that his doctor informed him that he has a touch of RA, but only in his hands. As of now, it is still only in his hands, and he only takes Aleve if needed.
    I cannot argue with him, because he adamantly believes his doctor. After all, a doctor is supposed to know these things. But I strongly suspect that it cannot possibly be Autoimmune Arthritis. Therefore, I know that there are still general practitioners out there that have not been educated over the years on the current understanding of the course of Rheumatoid Disease and the difference between RA and Osteo-Arthritis.

    Reply
  • September 30, 2013 at 3:10 pm
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    Thanks again Kelly for a great resource!! Information like this gives us the opportunity to have a discussion with our rheumatologist and other health professionals. How true it is that they need to work together. Not once has my rheumy said anything about my high blood pressure, but my blood pressure was always low before, and I know it is RD related. I have to take it upon myself to make a heart-related appointment with my PCP.
    Also, you struck a cord with me when you say that arthritis is a symptom of RD, it is not what we have. Wow!! I just posted something on my Facebook page because of a local marathon that was run to benefit the Arthritis Foundation and their theme was to encourage people to “just get up and move.” Move?!? Really??! Is that all there is to it?? My rheumy specifically told me not to exercise until my disease was under control. Further exploration of their website lead me a lot of information that didn’t apply to me and quite frankly, for someone with RD, was just ridiculous and useless. It only helped to further the point that is so much more to our disease than what they would lead the general public to believe.

    Reply
  • October 2, 2013 at 10:26 pm
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    I grit my teeth and try not to yell, “IT’S … NOT … RHEUMATISM.” But the people I know who “have that in their elbow” do genuinely have pain, and they don’t deserve my yelling at them. So I yell in my head while outwardly I gently try to explain that it’s an autoimmune disease.

    Reply
  • Pingback: Round Up: October 4, 2013 | Ortho In Motion

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