What Does World Arthritis Day Have to Do with RA? | Rheumatoid Arthritis Warrior

What Does World Arthritis Day Have to Do with RA?

Over the past week, there have been a few Tweets on Twitter about World Arthritis Day. The Arthritis Foundation posted them asking RA’ers to “join in.” It raised this question: Is World Arthritis Day about RA?

 “ACR is participating in World Arthritis Day”

world arthritis day badge ACRLast week, I was on the website for the American College of Rheumatology (ACR) gathering details to prepare for my trip to ACR’s annual Scientific Meeting in November. I saw this exciting little badge with blue sneakers. It was an ad for World Arthritis Day. It said, “Learn how the ACR is participating.” I wondered how? So I clicked.

The link goes to a page titled: “Osteoarthritis Awareness Campaign.” Text on that page begins: “The ACR is a partner with the Arthritis Foundation and Ad Council on Osteoarthritis Initiative: Fight Arthritis Pain. As a part of this initiative, the ACR is joining the Arthritis Foundation as it celebrates World Arthritis Day on October 12.”

There is a video public service announcement (PSA) about arthritis (aka osteoarthritis). There are a couple of links. Then the page ends this way: “You may need to see a rheumatologist to treat your osteoarthritis. The ACR offers a directory you can use to search for a rheumatologist based on where you live. Find a Rheumatologist. Osteoarthritis, the most common type of arthritis, currently affects nearly 27 million people in the United States. But there are simple steps everyone can take to prevent and decrease the pain and disability of OA.”

There was nothing there about RA. I kept asking myself whether I was surprised. I’m still conflicted.

  1. No, I’m not surprised. I knew World Arthritis Day is not about Rheumatoid Arthritis.
  2. Yes, I am.  I thought they would give a nod to RA so that we RA patients would be willing to promote their campaign.

world arthritis day tweets

Why aren’t they asking OA blogs to promote it? Are there any OA blogs?

Rheumatoid disease does not require the word “arthritis”

If you‘ve been following the recent discussions about RA Awareness here on the blog, you’ve heard the outcry to change the name of the disease often called Rheumatoid Arthritis, in the U.S., anyway. Changing the name is not an original idea. For a long time, I answered people, “That’s a nice goal, but we probably won’t see that happen.” This last week, in our first RA Meme, people declared over and over that they want the world to know that “RA is not arthritis.” I no longer believe that changing the wording is impossible. I think it is a matter of time.

My smart rheum doc, the one I talked about in my recent video, has never used the “a” word (arthritis) in my presence. Doc calls it “the Rheumatoid.” My daughter was researching for a college project and she ran across numerous academic links which simply said “Rheumatoid Disease” instead of Rheumatoid Arthritis. It was fun to tell her, “Yes! I told you so.” Come to think of it, no rheumatologist I’ve ever been to has used the “a” word in front of me. The docs don’t seem like they are devoted to “arthritis” as the name for rheumatoid autoimmune disease. Their website links about World Arthritis Day seem to reflect that.

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/

58 thoughts on “What Does World Arthritis Day Have to Do with RA?

  • Pingback: Tweets that mention What does the ACR say about #worldarthritis day? Looks like it's not about #RA #Psa #AS #JRA #Lupus #ReactiveArthritis -- Topsy.com

  • October 11, 2010 at 8:08 am
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    I sure wish they WOULD just change the name to Rheumatoid disease or Rheumatic disease. I’m sick of people that don’t get it and won’t look any further once they see the word ‘arthritis’.

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    • October 11, 2010 at 8:59 am
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      It definitely would take away their ability to dismiss it on those grounds.

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  • October 11, 2010 at 8:37 am
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    Interesting that the ACR doesn’t even mention us auto-immune afflicted! grrrr I think tomorrow I will wear my blue “WHatever” T-shirt and see what comments I get, I have a bunch of errands to run (shuffle)…thanks again Kelly for your continued work and providing us warriors with valued information! 🙂

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    • October 11, 2010 at 9:00 am
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      I love that blue shirt! 😀 I have 2 cuz they messed up one & gave me a 2nd. I wear all the time.

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  • October 11, 2010 at 8:44 am
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    I sometimes use the words i have a auto immune disease. rather then using the word arthritis cause everyone has that.. and if they truely have RA or a auto immune disease they ask what kind do you have insted… just my way of weeding out all the RA’s in the world who have oa

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  • October 11, 2010 at 8:46 am
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    those ones who have a touch of “that” in their shoulder or wrist anger me to no end

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    • October 11, 2010 at 9:01 am
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      LOL. Wouldn’t we like to have just a “touch of RA” – maybe it could be in the ends of my hair so I could cut it off!

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    • October 12, 2010 at 2:25 pm
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      that is a brilliant way of thinking about it…I’m taking your idea into practice!

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    • October 12, 2010 at 2:27 pm
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      This PISSES ME OFF to no end. I even see many RA’ers promoting this, and I just don’t get it. If it makes them feel better, I’m usually all for it, but not this time, not this fight. WE NEED TO ORGANIZE AS WARRIORS, AND DEMAND A NAME CHANGE. That would be 10X better than an RA day, it would be RA day year round after a name change. The question is, how do we organize?

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  • October 11, 2010 at 8:51 am
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    I agree. I get pretty tired of people dismissing my disease as just plain old arthritis. It isn’t plain old arthritis. It is an autoimmune disease that involves so much more.

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  • October 11, 2010 at 8:56 am
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    What an interesting article this turned out to be. I do believe my rheumy also has always called it Rheumatoid Process, Disease, Immune disorder. The only place I see the RA is on the billing sheet. Very interesting.

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    • October 11, 2010 at 8:59 am
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      Same here Tammy. Only time I see RA is on a lab test at the new lab “RA test.” All the other labs said “Rheumatoid factor/ Rf.”

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  • October 11, 2010 at 8:59 am
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    I think in future when someone asks me what is RA? , I shall call it Rheumatoid Autoimmune disease.

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      • October 11, 2010 at 9:12 am
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        You know what Kelly even my mil didn’t realise the difference & I’ve known her for 24 years. My hubby & I were in the car the other day and he informed me that she’d asked him why I have to rest so much, and why I get so tired after doing things when hubbies Dad doesn’t. To which hubby replied, ‘Mum, Dad has OA in his knees & back, Gilly has RA which affects the whole body not just the joints’. He went on to explain to her a little about how the fatigue affects me. I was so touched that he’d taken the time to explain to her.

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        • October 11, 2010 at 9:35 pm
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          He is a keeper. Clone him please.

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  • October 11, 2010 at 9:01 am
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    RA is a totally different ballgame…My recent visit to my Arthritis Reconstruction Orthopedist is proof anyway that some Docs are starting to get it…but NOT many unfortunately…there is hope…we must keep fighting to get the word out…I am so very tired of hearing “oh..you only have arthritis”….when it is a systemic disease….

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  • October 11, 2010 at 9:35 am
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    hi kelly,

    now that you’ve mentioned it, my rheum lately has never used the “a” word. well, he did mention it when i was first diagnosed but after that i never heard him mention it again…because RA is not “arthritis”…

    hope that in your upcoming trip, you would be our voice… 😀

    God bless always!

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  • October 11, 2010 at 9:53 am
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    Kelly – this was a thought provoking post. It prompted me to look up the definition of arthritis, and here is what I found:

    Arthritis (from Greek arthro-, joint + -itis, inflammation; plural: arthritides) is a group of conditions involving damage to the joints of the body.
    en.wikipedia.org/wiki/Arthritis

    So, according to this definition, RA certainly IS arthritis. But it is also so much more, isn’t it?

    So if arthritis is only one symptom of our disease, then I fully support the movement to change the name. I resent the implication that joint pain is the ONLY symptom of our disease. What about the fatigue, hoarse voice, full body stiffness, eye pains, internal organ damage, etc.?

    As an aside, I have also seen first hand the damage that OA can do. Two family members have very severe OA with deformities and multiple surgeries. The pain that they experience is significant and the deformities and nodules are an ever-present reminder that the disease is indeed nasty and evil, just like RA.

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    • October 11, 2010 at 1:36 pm
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      Thanks, Marie. You know, most people have OA eventually. RA patients tend to have more OA than the general population. I have had it for years in some joints. There are a handful of other diagnoses, but none of them have completely affected my life the way RA has, so I focus on RA here. But, yes, other conditions can certainly be evil also. I wrote that last night for an upcoming post this week. Agree.

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    • October 12, 2010 at 2:39 pm
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      I think you have a valid point. OA sucks too. But not “just like” RA, it sucks in a much different way.

      And to the point that they are both affecting the joints, well that is a weak commonality to be categorizing 100+ different diseases into one.

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  • October 11, 2010 at 10:29 am
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    When I was first diagnosed with RA, my rheumy actually said that OA is the one that is misnamed, because the “itis” in “arthritis” means inflammation, and there’s no inflammation in OA. Which I have always thought was interesting, but not very helpful, because the idea people have in their heads about arthritis is a little pain in a joint or two now and then.

    I’ve started just saying RA most of the time. And I’ve started talking about it more. Trying to practice what I preach. 😉 Being honest about my bad days without being a whiner. 🙂

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    • October 11, 2010 at 11:56 am
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      That is an odd comment from a doc. In OA there is most definitely inflammation, but it is usually localized to the affected joint or joints and the process/cause of the inflammation is different.

      As much as we don’t seem to like it, arthritis (i.e. joint inflammation), is a component of RA. So I don’t think we should distance ourselves from this symptom of the disease, but I do think a name like Rheumatoid Disease is warranted.

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  • October 11, 2010 at 10:55 am
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    I agree. RA is NOT arthritis…it is more like MS or Type 1 Diabetes. The RA title implies that this disease is a mere inconvenience, it minimizes the effects of the disease and implies (in multiple medical journals) that people who suffer from RA are just a bunch of ‘hysterical, women with a low threshold of pain, whining about our aching joints in an attention seeking manner’.
    Nothing could be further from the truth!
    I wonder if RA sufferers, mostly women, have been bullied into accepting this title by the medical profession. The same medical profession that has minimized and even gone as far as to deny our pain or the fact that we are suffering from a devastating & crippling disease. I imagine those same MD’s and authors of inaccurate medical journals would cry like a stuck pig if the ever woke up and found themselves unable to use their hands, or feet, or were unable to walk, or work, or see through the pain.
    Getting a new name for RA, like the Rheumatoid Disease, would be an empowering thing!

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    • October 11, 2010 at 12:32 pm
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      I take your post fairly personally. First off, I’m a man. Men get this disease too. I suffer with it the same as you do. Second, I’m a drug researcher and I’ve published several articles in scientific journals. Never any for RA though as that is not my specialty. I’ve always conducted my research with the highest integrity and have always been careful to state my research accurately.

      The name rheumatoid arthritis has been around since the mid 1800’s so I don’t think it was anyone’s attempt to bully anyone. From the way I understand it it was an approximation to describe the condition based on its clinical manifestation and also relate it to another disease that was more common, rheumatic fever. The name has been around for a long time and I personally think it is due for a name change as we now know so much more about it.

      Please don’t throw a wide net and cast apersions on the very profession and people that are trying to help us treat this disease and find new treatments. We’re not the enemy. The biggest enemy is ignorance and the lack of understanding of our disease in the general population.

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      • October 11, 2010 at 1:21 pm
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        Hi, I still don’t know your name, but we have lots of men who read the blog and interact in our Facebook group. Didn’t you say you are newly diagnosed? I’m wondering whether there may be some experiences that some of us may have in common that you may not have had yet, either because you are male or because you are newly diagnosed.

        You know, I’ve read some of the same articles that Ruby has. She may have even seen some of them linked from this blog. You probably should read the book The Empowered Patient by Elizabeth Cohen of CNN. She documents much of what Ruby says in terms of the ways women are diagnosed and treated. It has been proven so especially for chronic diseases, and RA in particular. Their symptoms are minimized & their treatments are delayed or insufficient, partially due to the fact that they are female. There are plenty of articles that treat RA as it has been historically thought to be, an hysterical woman’s ailment.

        I never would have thought of you in that camp, so those remarks would not apply to you. I do know other researchers and doctors and folks in the medical industry that do not have this view of RA, but it exists.

        There have been some pretty shocking statements I’ve read about the way that RA is “understood” as a whole, even by researchers. The fact that the way RA is reported does not tend to line up with my experience (of my own RA & thousands of online contacts) is part of the reason I write this blog. I agree that RA should be considered similar to Type 1 Diabetes or other serious systemic diseases.

        I’m extremely pressed for time today & will be traveling. But I hope you we can set up a time to talk more either here or via email. Here are some posts that come to mind, but there are others that demonstrate the point. Links that might be helpful:

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        • October 11, 2010 at 1:52 pm
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          I’ll shoot you an email with my name. I know you’ve asked a few times. I have some very valid reasons for not sharing it on the forum.

          What kind of experiences are you talking about? I usually get along pretty well with doctors because of my profession. So I have different experiences than most people I think. I think the most striking example I’ve seen of how medical professionals treat different people was with my grandmother (she had RA too). She was in hospital and I was there visiting her. The nurse came in to give her something through her IV. My grandmother asked her what it was and the nurse gave some flippant response. Then my grandmother said that she was a pharmacist and wanted to know what she was giving her and the nurse’s tone changed immediately and told her exactly what it was in very technical jargon.

          Is there a big difference in the way men and women are treated at the doctor’s office? I guess I was unaware that this was a problem. I’m sure there are some bad apples out there but is it a systemic problem? I would’ve thought that in todays day and age that this kind of stuff would be long gone.

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          • October 11, 2010 at 3:17 pm
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            I really think you should consider the Cohen book. Also, in addition to the other links here’s another link I’d like you to take a look at. It’s a doctor’s blog where I am a contributor. My own grandmother came to mind in response to your story. She was not a pharmacist. She was a writer in the aviation industry. Bright lady. What about patients who aren’t pharmacists & don’t get the response yours did? The statistics are sad, ResearcherandRAPatient. The kinds of experiences I’m talking about? In addition to the death of my grandmother, here is the story of my bout with a severe case of parvo virus – click here. Also, I can tell you there have been numerous encounters during which my RA symptoms were ignored, minimized, or doubted by doctors. This is part of the reason it took many years for a diagnosis. What these many experiences have done for me is to make me able to believe people like Ruby and hundreds of others who speak about their experiences. There are numerous professional women (some forced into disabilty by RA) who respond on this blog. They tell these stories & I believe them. Some are nurses or lawyers or executives or professors. Some are moms like me, but we all should deserve the same care or respect in the medical setting. The statistics just say its not that way, espcecially with chronic pain & “invisible” conditions like RA.

          • October 11, 2010 at 4:03 pm
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            Add me to the list of professional women (Vice President at a public financial institution) with symptoms that were ignored, minimized and doubted by the healthcare system. I myself am an avid researcher (although not by profession), so I was almost certain I had RA after about 6 weeks of suffering. It wasn’t confirmed until 9 months later after numerous invasive tests, scans, scopes and ER visits not to mention months of suffering and intense pain. The last time I went to the ER, I woke up and could not walk. I hadn’t eaten for days and had just lost a lot of weight. I was very sick. The ER doc gave me a lecture and told me I was wasting his time. About an hour later, after my husband placed a strategic call to a friend who happens to be the director of this hospital, the doc comes in to apologize and offer more tests.

            So yes, this problem is widespread and systemic. It’s one of the reasons that my personal preference is to be treated by female MDs. I feel like I have a better chance of being taken seriously by other females.

          • October 11, 2010 at 9:30 pm
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            I read the links you gave. There is a lot in there. I’m with you in that I’m not doubting people’s claims and stories. I believe that these things happen.

            I guess for me what I keep coming back to is, is this really a women vs. men issue or is it more of a bad doctor issue? Either way it is a bad situation, but I hope it to be more of the latter than the former. Discrimination like this has absolutely no place anywhere, much less in the practice of medicine. It may be little comfort but I’m sure you’d get similar stories from men as well. I can’t say that I’ve had any experiences that come close to anything that I’ve read here, but I’ll definitely be watchful of this in the future. Sorry you had to go through that kind of crap.

            It also took me about 9 months to get a formal diagnosis. I didn’t wake up one day with all the symptoms. There was a steady progression for me in those 9 months. Around the time I was diagnosed they were very classic in their clinical manifestation although my labs were less clear.

          • October 12, 2010 at 4:36 am
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            Well we’d have to search and see if there are many articles dealing with RA experience in men vs. women. I know I read one abstract some years ago that said that men with RA are referred for joint surgery a lot sooner that women are. I’d truly hazard a guess that men are on the whole diagnosed a lot sooner than women because of the hysterical factor. Their pain is taken more seriously. Nine months is probably pretty quick for dx compared to what most have gone through, although much does depend on how insidious the onset is and how classical or atypical it presents.

  • October 11, 2010 at 11:42 am
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    My last 24 hours with “arthritis”: Fever in the morning–fatigue, stiffness, joint pain during the day–then a night full of muscle spasms and point tender joints. Today I woke up to do it all over again. And these are “not-too-bad” days. My family and true friends get it when I say I’m having a tough RA day. But for the rest of the world, I’m done with the “a” word–and probably with rheumatoid too since I think it may link too closely to arthritis. From now on, I have an autoimmune disorder. If people want to know more, they’ll hear what it’s doing to my formerly strong body and how it threatens my future–not just a convenient label.

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    • October 11, 2010 at 2:27 pm
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      deac-in-training – I’m with you! If only there were another term that was “easy” to use! “RA” is easy. Rheumatoid Arthritis has 120 years of use and is easy. Auto-immune Disease has one less syllable, but is not euphonious. What to do?
      I’d go with Auto-immune Disease, but that will confuse RA with LE, Sjogrens and numerous other conditions that are significantly different. I’m not sure what the answer is going to be.
      RAD is what I’ve been using recently – Rheumatoid Arthritis Disease – to point up the fact that this is a disease and may have implications beyond our horribly painful joints and mind-numbing fatigue. Such as – uviitis and blindness; Sjogrens; inflammation of the membranes around the heart leading to pericardial effusion – a collection of fluid around the heart that can lead to sudden stoppage of the heart; increased risk of heart attack; vasculitis. The list goes on and on.
      Most of the people who know me know that my mother died from RA after 15 years of incredible struggle that so touched her rheumatologist that he came from his home at 10pm to her nursing home to give her a hug and tell her “goodbye.” She died 1 day later. She weighed 85 pounds when she died. Every joint in her body was involved, she had severe uviitis and Sjogren’s, and degeneration of all of her spine from her head to her coccyx. She had inflammatory arthritic involvement of the tiny bones in her ears and had become deaf.
      Sorry, didn’t mean to be so passionate. I’m just tired of people dismissing other people I know who have RA. It’s getting to the point that I am about ready to start the revolution!
      Elizabeth

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      • October 11, 2010 at 3:23 pm
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        Dear Elizabeth,
        I know several women who lost their mom’s to RA. It is so sad to think of your mom not having the treatments we have today to help her at all. Don’t apologize. Your passion is just what we need. :heart:

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      • October 11, 2010 at 7:53 pm
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        For me, autoimmune diseases (plural) would be the most accurate descriptor–RA/PA among others. I find that a lot of people really don’t care what I have. They ask to be polite. So I answer to be polite 🙂 If they ask for more detail because they really want to know–or if THEY have autoimmune disease and get it–then I can fill them in. The vague “medical condition” is helpful when I don’t want to explain–that one tends to make people nervous so they don’t ask questions.

        Also, for me, it’s either RA, PA or (most likely) both, but my rheumatologist hasn’t been overly concerned about the label since he would treat it the same way anyway. So it’s more accurate–and much shorter–or me to say “autoimmune arthritis,” but then I’m right back with the same problem.

        BTW, I have an acquaintance who has Ankylosing Spondylitis who says “I have a rheumatoid class disease” because she finds people get “rheumatoid” way better than they get AS. Maybe not accurate, but it gets the job done.

        And yes, autoimmune disease doesn’t exactly roll off the tongue. 🙂

        Kris

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  • October 11, 2010 at 2:17 pm
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    My “just arthritis” has affected my stomach and intestines to the point of needing an indwelling,permanent IV catheter for 7 years, and years of frequent hospitalizations due to nonstop vomiting, abdominal pain, and dehydration. Secondary life-threatening MRSA infections were all too happy to infect those IV sites close to the heart. My “arthritis” has also affected my heart, resulting in scar tissue around it. It’s also caused problems with the lining of my lungs, joints, kidney abnormalities, questionable cause of multiple miscarriages, ongoing fevers, fatigue and complicates every day of my life. . My “arthritis” also caused me to give up a career I loved.

    I know osteoarthritis is bothersome for millions of people, but it should not be in any way, confused with RA. We need our own “World Rheumatoid (Autoimmune) Disease” Day.

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    • October 11, 2010 at 3:21 pm
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      Dear Julie, and a career as a care-giver at that – as an RN. You could be our poster girl for “not just arthritis” :heart:

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  • October 11, 2010 at 3:13 pm
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    Okay…surprised…
    My rheum has always used the “a” word. I have never been told any different. I know it is auto-immune, but have always been led to believe that it is arthritis. On to the show…lol…thanks for letting me know…

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  • October 11, 2010 at 5:00 pm
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    THANK YOU to all who shared!
    I too am a professional that had to give up my career because of my numerous auto-immune diseases, RA the most recent to be diagnosed, (2 years ago). I’m sure it’s been there all along——in retrospect I know it has.

    I say, let’s get on the bandwagon for a name change!

    I too have started telling others I have autoimmune diseases. I also have osteoarthritis, and spinal stenosis. There is a difference, although it all hurts, but in different ways!!

    Thank you Warrior Kelly for giving us all a voice, even when it might be a hoarse one!
    Love and Blessings for all that you do : )

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  • October 11, 2010 at 9:17 pm
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    My feelings on changing the name is simple it will not make a difference on people understanding this disease. Living with cronic pain is the worst thing I have been through and before I had RA would have never understand the pain of it. This is something that can not be described the only way to understand it is to live through it the name will never change that. When I go to work tonight I will wear my blue but got a feeling that the 126 other employees I work with (unless I tell them why) will have no idea or care as why I am wearing blue. God bless you all

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    • October 12, 2010 at 12:50 pm
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      I think you’re on to something here, Roger. How can anyone really “get it”? I couldn’t have before this disease hit me.

      The name doesn’t seem to matter much to most people who question my “health issues.” If I say rheumatoid or psoriatic arthritis, they say “you’re too young” then they free-associate and start chatting about their aunt/sister/cousin who has bunions/sciatica/sinusitis. But if I say “several autoimmune diseases” they glaze right over and go to the trials and tribulations of that aunt/sister/cousin. (At least I’m spared the “you’re too young” comment and that awkward social moment passes more quickly 🙂 )

      I’ve wondered what it would take to have RA and similar diseases have the scary name recognition that cancer has. I think RA kills us too slowly to have that no matter what you call it.

      Does it make me a cynic that I’ve stopped yearning for understanding from people in my life? Well, it does make it easier to have lowered my expectations because then any empathy is an incredible gift.

      However, that doesn’t address the issues of how research and medical dollars are spent, discrimination on the job, the shortage of rheumatologists, or the lack of consistency in diagnosis and treatment. These things are dramatically affected by perceptions of these diseases. So the question remains: How do you revise perceptions that have been centuries in the making?

      No answers from me. Only questions. Here’s hoping that the people who matter most in our lives do “get it.” And that somehow we shift public understanding.

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  • October 11, 2010 at 10:11 pm
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    I am offended that the ACR would participate in this event, without being very vocal on the differences in OA and RA. It just continues the confusion of people believing they are the same disease.
    It is a shame with all the nurses, lawyers and researchers we have on this site that we can’t put together an RA education program.
    Start out offering it free to the nurses in hospitals (even better if we can get it approved by the board of nursing for credit). We just need someone that still had the energy and physical strength to be there on time and haul everything inside. lol —

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    • October 14, 2010 at 12:33 pm
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      Tanya, we can. It’s just going to take time. But I think we can.

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  • October 11, 2010 at 11:35 pm
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    I have both OA and RA. I have had ostheoarthritis in my knees since I was 30 from sports and racing motorcycles. I was diagnosed with RA at age 45. I have had so many people tell me “I thought RA was an old persons disease”. When I tell them, no thats ostheo, rheumatoid can develop at any age, they look at me like they don’t believe me.
    For most people watching tv, it appears that RA isn’t any big deal. All we have to do is take a Celebrex and we can go out running afterward.
    I would like to see a name change but think that for quite some time after the name was changed most people would say, oh… its just rheumatoid arthritis.

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    • October 17, 2010 at 3:31 am
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      I disagree, b/c I think with a name change, we could try to attach an awareness campaign of some kind (ultimately if we could change the name of all auto-immune forms of “arthritis” that would be best – we could work together). Also, when someone asks what I have, I could legitimately tell them “auto-immune something or other” and they wouldn’t automatically think arthritis. Maybe some who already know RA would, but I think the vast majority of people have no clue what it is, so if we introduce it to them as something other than “arthritis”, I think it would make a huge difference. They would probably ask questions instead of shifting their minds to old people/osteo immediately (that’s what I did when a friend recently told me she was dx with AS – I said, “what’s that like?”). With every new dx, and every passing day, new families would hear a name that made no sense to them, and wasn’t called “arthritis”, so they would be curious as to what it is….it’s worth a shot, that’s why I started a cause on Facebook called “Rheumatoid arthritis does not = arthritis”, I’m not giving up without a fight….that’s why we’re called warriors!

      Reply
  • October 12, 2010 at 4:28 am
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    Wow… Kelly, I just want to thank you for bringing this to my attention. When I heard “World Arthritis Day” I thought, YAY, it’s our day!!! I really didn’t know about the osteoarthritis generalization. Then I followed some links and read more thoroughly, and as you said, they all ended in some information about OA and how important it is to eat Omega 3 and exercise to not get arthritis as you get older… 😮

    Yikes… that’s just really sad.

    The Norwegian Rheumatism Association has a campaign today called “Open for everyone” giving awards to manufacturers who create packaging that is easy for rheumatics to open. That seems like a campaign that is helpful to us all. No mention of OA there.

    Reply
    • October 14, 2010 at 12:31 pm
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      We need that here. In UK, they have NRAS. Love the “open” thing – I had not heard about that.

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  • October 12, 2010 at 6:49 pm
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    That doesn’t mean that WE can’t promote RA on this day, which I did on my Facebook. Perhaps, working together, we can also wake some of these people up.

    Reply
  • October 12, 2010 at 9:12 pm
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    Here’s a reference I saw yesterday and it doesn’t have the word “arthritis”:

    IMID – Immune-Mediated Inflammatory Disease. It will only make people’s eyes glaze over, but might stop them in their tracks before going on about their own OA.

    However, if you go to PubMed and type in rheumatoid, then type in osteoarthritis and see how many fewer papers there are for OA compared to OA. OA does need to be addressed with more research dollars and a cure too, since it does affect a greater number of people, a big subset being we RA’ers who either get it pre-RA, concomitantly, or secondarily when our RA joints finally do burn out.

    Reply
  • October 13, 2010 at 1:31 pm
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    I checked out the twitterfest yesterday under #WorldArthritisDay and quickly tuned out. There was one person there who had RA and kept telling everyone the best way to treat it was by losing weight and exercise. 😮
    I thought it best to just leave the can of worms unopened.

    Reply
    • October 13, 2010 at 9:17 pm
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      Thanks so much for the report, MaryK. I think we have opened the can of worms here perhaps.

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  • October 17, 2010 at 2:40 pm
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    Hi all! I don’t have RA, but my mother was diagnosed after she got pregnant with my brother 15 years ago.

    I just wanted to let you all know that sometimes your relatives and children CAN understand how hard it is for you to live with RA and the resulting systemic health problems. We might not have felt your pain, but we’ve seen how it can change your opinions and plans and bodies so drastically. Then we educate others who we meet just because caring about someone with RA is ingrained into our lives. Being open with family and friends helps to raise awareness, because we go on to understand how drastic this disease is. We then add more people to the ranks of those who don’t understate the effects of RA and the sacrifices you all have had to make.

    I was raised with the knowledge that my mom would have a hard time doing many things. I was there on the receiving end of the mood swings brought on my prednisone dose increases. I worried about her being harmed when she was a test subject for Embrel, and was overjoyed when it made her life so much better. I try to help my dad understand why the housework can’t just be my mom’s “job”; that she can’t work because SHE HURTS, that housework actually is WORK. I’ve stepped up to the plate after two feet and hand surgeries. I’ve seen how every other health problem imaginable has caught up with her. I’ve seen how she still lives her life and tries to be a warrior. I know I could never do it. I respect her so much for not letting it get her down. She has days of depression, but she tries to wake up the next day and walk tall through her life and hardships.

    Long soapbox post short, some of us see your pain and understand to the best of our abilities how much RA affects your life. We can be aware, and we try to make other people understand that RA is different than OA and that it’s not “just a little joint pain”. We just need you to share with us. Tell us how you’re doing when we ask. Tell us if you need help. Share with us treatments you’re considering. Most of us want to help, but we don’t know how to at first.

    Take care and stay strong.

    Reply
    • October 18, 2010 at 9:18 pm
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      It’s good to hear from you, Breebit. Thank you for your post. I think I may respond to it in a blog. It was very moving to me as a mom of 5. My children do try in the ways you say. I also have a close friend who does the same. Others don’t. We do need “awareness” and people like you are our best ally & help. God bless you and your mom.

      Reply
  • October 12, 2013 at 11:38 am
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    I have been recently officially dignosed and finally on treatment after years of a pain I could not understand or explain nor doctors figure out. So today, the thought of people saying to me “Or it’s just arthritis, I get that too,” it’s a complete insult, as I struggle to get out of bed, to go to work and how I struggle to hide how I’m falling apart inside, as I’m poked weekend for different bloodwork each coming back with some new disease to be added to my list. So YES I am a superhero indeed, as I everyday fight with an indescribable chronic pain underneath my smile. I can see how this can be confusing for some, as I might look just like anybody else, but NO I am NOT OK. I have an invisible illness; I am a proud spoonie and people need to educate themselves in order to understand.
    So from the bottom of my heart, I Thank You for this blog. You’re a not only the vehicle to educate those who can’t seem to understand, but an inspiration and strength to us who need to be reminded that we are not alone. May God keep blessing you to keep pushing our cause to those still confused and in disbelieve.
    Thank you

    Reply

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