5 Reasons Rheumatoid Disease Is a Better Term than Rheumatoid Arthritis | Rheumatoid Arthritis Warrior

5 Reasons Rheumatoid Disease Is a Better Term than Rheumatoid Arthritis

paneling in Sears TowerThe first blog post of this year told how I’ve come to prefer the term Rheumatoid Disease to Rheumatoid Arthritis. The response?  Within 2 days in Facebook-land, there were 294 Shares, 583 Likes, and 128 comments. There are now 1,000 Likes, 500 re-Tweets, and 80 blog comments. That’s people voting with their mouse: Yes.

But as I said back in January, there will be much more to come on this topic. Today, let’s look at 5 reasons that saying Rheumatoid Disease is better.

5 events show calling it Rheumatoid Disease could help

1) As researchers recently explain, Rheumatoid is a systemic disease, present outside of joints, and prior to articular abnormalities: “Rheumatoid arthritis (RA) is recognized to be an autoimmune disease that causes preclinical systemic abnormalities and eventually leads to synovial inflammation and destruction of the joint architecture.” So much for those saying “There is no RA before visible synovitis / joint swelling is diagnosable.”

2) Patients – and doctors – themselves are confused by the name. The blog has seen hundreds of these examples, but here are two from this week:

  • An ENT specialist reacted to an RA patient complaining of vocal cord inflammation. “He looked at me like I was an idiot and said ‘But there are no joints in the voice box.’” (In case you didn’t know, one, that doesn’t matter since RA affects more than joints and, two, yes there are. Joints in the voice box that is.
  • Another RA patient visited the eye doctor “after I came down with a bad case of Iritis and Epislceritis. When I asked my ophthalmologist what it was, he said ‘You have arthritis in your eye.’” This doctor knew the disease could affect eyes, but didn’t have a term to explain it. Saying “arthritis” in the eye is not logical since “arth” means joint” and there are no joints in the eyes. No, really. This time, there aren’t.

3) Non-articular symptoms of Rheumatoid would be more likely to be treated if the term were updated. We constantly see this struggle. The opinion of an expert: “Perhaps rheumatologists should consider revising the approach adopted in the routine assessment of RA patients by using an annual review form to include the systemic aspects of the disease in addition to its articular manifestations. This could be roughly analogous to the approach taken by diabetologists for decades, which has helped to reduce mortality through regularly recording of predictors such as blood lipid profiles, blood pressure, hepatic and renal function, together with a global measurement of disease activity.”

4) Researchers still don’t know enough about Rheumatoid disease to say why or how it attacks the body. Their work is better served with more accurate terms: “‘We call it rheumatoid arthritis, but we should really call it rheumatoid disease,’ notes Elinor Mody, MD, director of the Brigham and Women’s Hospital Women’s Orthopedic and Joint Disease Center in Boston. Rheumatoid arthritis can damage the whole body. Besides the joints, the ‘heart and lungs are the most commonly affected,’ says Dr. Mody. Doctors aren’t sure how or why rheumatoid arthritis causes other organs to suffer. ‘We don’t know the whole story,’ Mody says.”

5) Lives will be saved. Just last week, two more patients posted that their doctors dismissed symptoms, judging their disease according to their hands, even calling RA a hand disease. I’ve seen this firsthand as well as hearing from many patients that this common misconception lives on even in some doctors. Changing the name will correct this misconception and call attention to the need to treat the whole disease. In spite of common confusion that RA activity is concentrated in the hands, there are several dangerous aspects of RA that are more common than once recognized such as spinal damage, heart disease, or lung disease.

Bonus: Click here for a printable list of 10 reasons RA ought to be changed to “Rheumatoid Disease.”

Read me:

  • Don’t miss our brand new magazine page! Whether you missed a post or you are looking for a favorite one, you can find every post on one page – click here. Or click SeeAll on the menu.
  • Click here to read Kelly’s new article in The Rheumatologist (the print magazine for rheumatologists) discussing the patient’s role in healthcare.
  • In a new radio interview with Dr. David Borenstein, former president of the ACR, Kelly discusses ways to make life better for people living with Rheumatoid disease – click here to listen.

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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19 thoughts on “5 Reasons Rheumatoid Disease Is a Better Term than Rheumatoid Arthritis

  • April 18, 2012 at 9:23 am
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    It is very sad that even some clinical professionals do not understand this disease. I am very thankful for those doctors who do get it.

    Reply
  • April 18, 2012 at 11:03 am
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    Hi Kelly,
    When I am asked about my Rheumatoid Arthritis I just explain that I have Rheumatoid Autoimmune Disease which is different than Rheumatoid Arthritis which affects only the joints. I explain that Rheumatoid Autoimmune Disease can effect the heart, lungs and other organs.

    thanks for all the valuable info that you provide

    George

    Reply
  • April 18, 2012 at 11:13 am
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    I wish this same concept would be applied to the other types of arthritis, like Psoriatic. There aren’t as many of us as RA patients. I actually just tell people I have RA because they usually at least have an idea that it’s a bum deal. If I told them I have PsA they really have no reference point and the reactions are. Terrible. “I’ve never heard of that. Are you sure that’s a real thing”

    Reply
    • April 18, 2012 at 6:03 pm
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      I was originally diagnosed with PsA but my current rheumy (same clinic) says I have RA. I don’t know why the change of diagnosis. I haven’t been there in a long time.

      But I too have told people I have RA for the exact same reason.

      Reply
  • April 18, 2012 at 12:26 pm
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    I agree 100% that the name needs to be changed. And I definitely like “rheumatoid disease” better than “rheumatoid autoimmune disease”, simply because it’s easier to say.

    On another subject, I was at my internist yesterday, and was shocked to learn that she knew almost nothing about methotrexate and its effects on the immune system! I actually had to tell her what it was and exactly why I was taking it. She also did not seem to understand the difference between osteoarthritis and RA. Yet, this woman graduated medical school and has been in general practice for 20 years!

    Reply
  • April 18, 2012 at 12:45 pm
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    I just read your article and agree 100% with the comment about a dr telling a patient to come back when it affects their hands. I had the same thing happen to me when I went to the Rheumatologist after I was diganoses last year.

    Reply
  • April 19, 2012 at 6:37 am
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    I’m not sure changing the name will help Doctors broaden their horizons. I do know that it helps me, since when I say it people actually ask what it is instead of assuming ortho. My doctor, though a fairly good rheumy, recently told me an area that ached couldn’t be RA because there was no joint there. Um. I asked her to rethink the possibility since I know what my aches feel like and this one was an RA ache. Attachment point of the trapezius is what she decided on, and definitely an inflammation. It is a systematic disease, and inflammation can occur ANYWHERE.

    Jennifer

    Reply
    • April 21, 2012 at 3:03 pm
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      That’s interesting to hear! 95% of folks I’ve told I have RA to assume that it’s “arthritis”. So to hear you’ve had a different experience is definitely different for me. People think they know what “arthritis” is, so as soon as I mention that word, their ears close, and so do their minds. I don’t know that I’ve ever heard the question, “what is rheum arthritis?” after saying rheum arthritis.

      You’re right, we know what RD pain is and when it happens. No matter where it’s at. (I’ve gotten that same reaction about back pain before)

      Reply
      • July 17, 2012 at 4:48 am
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        I actually have had one person ask me what that was, and if it was a painful condition…Bless her!

        Reply
  • April 19, 2012 at 4:54 pm
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    Will create less confusion hopefully

    Reply
  • April 21, 2012 at 3:15 pm
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    I just turned to my mom and said, “do you think RA should be called RD (rheumatoid disease) instead?”

    Her response was profound. She doesn’t have the disease btw… “if that’s what it IS, that’s what it should be called.”

    So is it a disease? Yes. Is it “arthritis”? Maybe technically it is CLASSIFIED as a TYPE of arthritis, but what did you think “arthritis” was before you were dx’ed with RD? My grandma had this DISEASE, and I never knew the difference b/w her RD and osteo. She would even say “my aurther is killing me”. So how would I or anyone else ever know that she actually had an auto-immune DISEASE? We wouldn’t and we didn’t. Is that the level of awareness that YOU are looking for? NOT ME! I’ll call it what it IS, a disease.

    Reply
  • April 29, 2012 at 9:30 am
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    I agree that the term ‘Rheumatiod Disease’ or RD easier to say than Rheumatiod Arthritis Disease. Not only that but the term RAD (in Australia at least) is a daggy and outdated phrase that means ‘cool’ or ‘amazing’. If I used the term RAD I would feel like I’d need to be back in the 80’s with big hair and bright blue eyeshadow. ( Oh wait, that’s back now isn’t it? LOL).

    Also dropping the ‘arthritis’ and adding ‘disease’ really does change the focus and better reflects what we are going through. Hopefully it will help stop the constant battle to distinguish it from OA and open people’s minds a bit.

    Reply
  • May 16, 2012 at 10:49 pm
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    I just found your page thanks to friend at work. I have had RA since 2005 and one of the first things I noticed after beginning treatment was a drastic change in my voice & hearing – but I can’t convince any physician of such. ENT said it’s hereditary (and that I had GERD) when I know of no one in my family that has hearing loss. Would you say that if it can affect your eyes that it could affect your ears?

    Reply
    • July 17, 2012 at 4:51 am
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      Point out to him that there are bones in the ear!

      Reply
  • May 24, 2012 at 8:47 pm
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    I allways thought it should be Rheumatoid Disease even when everybody was saying RAD. It just makes sense. Its got my vote!

    Reply
  • July 17, 2012 at 4:41 am
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    I will henceforth be calling it Rheumatoid Disease. The medical community will be forced to accept the word, as they have to communicate to the patient in words the patient understands. As an example, most patients refer to veins, and arteries simply as veins. Doctors know this, and don’t bother to correct. And hopefully when the name is widely accepted, it will begin to understood there is more to it than Arthritis.

    Reply
  • April 2, 2013 at 6:41 pm
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    I like autoimmune in the title. When i get to explaining what the disease is like (from my perspective) to those around me, autoimmune symptoms are more relevant than anything. Even with the meds i take (the costs always get them to sit up), i have fatigue, sudden onsets of localized swelling, numb feet, cold fingers, dryness and so on. Many of these are not recognizable as RA.

    Reply
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  • November 23, 2017 at 8:40 am
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    Your exactly right! RA isn’t limited to hands ONLY! I have it all over my body but my last Rheumatologist only wanted to say it was in my hands. That’s why I fired her and am now waiting to see a new one! Hope he has some better answers for all of my pain!

    Reply
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