We Refuse to Be Mislabeled: Updating Rheumatoid Arthritis (RA) to Rheumatoid Disease (RD)
Three years ago, I saw Rheumatoid Arthritis (RA) patients insisting that the name of the disease needed to be changed. They argued that until the “a” word is removed from the name, confusion about the disease will continue. When asked, I said that we could not wait around for that to happen; let’s work for awareness right now whatever the name is. And I did.
It seemed that changing the name of a disease is a decision that’s not in the realm of patients. We can’t do that. It’s a job for organizations. With money. Who already control things. Which are not working well for patients… hm.
What changed my mind?
1) You did.
Spending > 60 hours a week communicating with other people with Rheumatoid disease impacted converted me.
Without my encouragement, people continued to press the idea that the name change is necessary. There’s no way I could count how many people have told me that they see a name change as a key part of the awareness solution. I’m certain it’s a vast majority.
For a smile, click to see Nancy and I discussing how Rheumatoid Arthritis could become Rheumatoid Disease – and my talking with Tanya and Valeska about creating a foundation for Rheumatoid that would be the “RA foundation” people have dreamed of – and a few days later, Julie encouraging people to use RD instead of RA.
2) The facts convinced me.
The fact is that Rheumatoid is not a type of arthritis. Arthritis is one symptom of Rheumatoid disease.
As I objectively studied the problem, I pulled apart threads like tangled yarn. Examining the origins of the confusion about Rheumatoid disease leads to clear conclusions about what must be done to correct it. The word “arthritis” is one unambiguous thread. My learning process included writing > 600 articles for this site and other publications. For a quick overview, click here to see the list of 57 articles labeled Rheumatoid Arthritis Awareness.
3) An RA / RD foundation: the Rheumatoid Patient Foundation.
A few say we must first spend our energy convincing other organizations that they must change their ideals or goals to align with those of Rheumatoid patients and give us what we need. Do people with other conditions or causes wait to be given whatever change they need? No, they demand it.
A year ago, we created the Rheumatoid Patient Foundation which represents Rheumatoid patients themselves. Momentum was tremendous during our first year and people are eagerly telling us they want to help more! That support will only grow as people learn of the tremendous plans the Board of Directors has for the coming year. You are wanted and welcome to join us! Click here to read how to play a part right now!
More support for the name change of Rheumatoid Arthritis
While I could list links to comments, and quote emails and blogs advocating the name change all day long, I urge you to read about a rheumatologist’s plea to change the name of RA, Response to An Identity Crisis for RA by Dr. R. Franklin Adams. OK, here’s just one more remark supporting changing RA to RD from e-Patient Dave deBronkart with an important point of grammar!
What’s next for RD?
The RPF is bringing fantastic ways to make impact with the name change and for you to help make a difference! Please follow the RPF now by clicking here and here so you will not miss anything! We can all participate in creating the awareness of Rheumatoid Disease / Rheumatoid Arthritis that we’ve all longed for. You’ll be able to join in incredible events coming up including a video contest, RD petition, and more!
Recommended reading:
- Hear My RA Interview on KISS FM!
- What Can We Do About the Rheumatoid Arthritis Awareness Problem?
- Woman’s Day Rheumatoid Arthritis Article: A Video Appeal
- Use the RA Info button for accurate awareness: Rheumatoid Arthritis (RA) Information
- Rheumatoid Arthritis Natural Treatment: The Beachcomber Article
rawarrior wow. I read Dr. Adams’ article about the identity crisis with #RAD #RA #rheum – very encouraging!
Kelly, Yes! Some encouraging news. RAD makes more sense. Thank you for all you do.
OH! This is such a huge deal to me, and I’m sure others. YES!
Does that mean we get to be RAD warriors now? Because I’m really liking the sound of that!
Jennifer
so please with that as i am sick of people who casually say “oh I have that”..what a joke ..no idea
atleast now there will be no confusion
chris
I think it would be a wonderful idea and a much better way of making the distinction between R.A. and other forms of arthritis.
You go, gurl. RAD is way better than RA. Yup, the arthritis part is only ONE of the lovely symptoms. This name change can happen. It worked for Type One Diabetes, it should work for us!
Yes, good point! And for other diseases, inclucing 2 rheumatological ones, wegeners and reactive arthritis.
Never knew this… thank you for bringing/demanding this change and leading us in our effort to do the same! You truly have no idea what this means to me, Kelly. You are a true Warrior & leader!
It occurred to me after reading your thoughts… I’d been going about it the wrong way… we DON’T NEED anyone else to change this for us, WE NEED TO CHANGE IT! If we simply use a new term (assuming that you all agree with what we are calling it, you will probably, I will), and demand those around us do so as well, then the name will change one warrior at a time. The clueless can refuse to acknowledge our name, but who are they? It’s NOT THEIR DISEASE! It’s ours! To have and to hold… and oh, to rename if we like (far as I’m concerned). Fight on, Kelly, we need you!
I think you were a mouse in my pocket— (catch the joke?) Not 20 minutes ago, Tom brought this up and we had a big discussion about it, and how RAD is a more proper term for the symptoms I have exhibited for years– without a dx. When we started talking about the many “signs” of RAD in my life.. (we have been married for 27 years)— the signals were all there— but the “arthritis word”– didn’t connect— if you use “autoimmune” as the “A” word…..the dots are connected!
Kim
sorry about all those dots, Kim. Love ya!
The dots validate—-no worries— (:
I love it! I’m not home a lot. I have a hard time keeping up. I try hard, but I just can’t always do it. I get here when I can, & try to read up via email, but I always appreciate the pointers and reminders. I love what you have done. It is very necessary.
The article by Dr Adams was very good.
rawarrior thanks for great post, I hope the name will be changed very soon 🙂 #rheum
Call it what you want it to be called, and it already has!
got to this post through an RA friend though my ‘arthritis’ is psoriatic, with Crohn’s. I think working to change the name is a GREAT idea for all the autoimmune illnesses with ‘arthritis’ in their names. I think I’ll propose that the National Psoriasis Foundation work on changing PsA to Psoriatic Autoimmune Disease. hmmm, maybe make that Autoimmune Psoriatic Disease otherwise the initials could be confused with peripheral artery disease…………… either way, it’s not as good an acronym as RAD!
I agree that it would be very helpful to change the name of psoriatic arthritis, too. I have that disease, and everyone confuses it with osteoarthritis. As soon as they hear “arthritis”, they blow off what I have as a minor issue similar to theirs.
I no longer tell people I have PsA. Because my disease includes spinal inflammation, I can truthfully tell people that I have “psoriatic spondylitis”. It’s a lot less confusing, and I get more respect from people when I explain I have an autoimmune disease that attacks my joints, tendons, ligaments, and even my eyes.
I love it!!! I have made it my goal to enlighten everyone I speak to about the subject in the differences between RA and OA. This just confirms for me that I am not the only person who is “bugged” by the lack of awareness, knowledge, or concern by anyone who is not afflicted by this disease. I am going to start using the RAD nomenclature from now on. Thanks for the post!
I believe this is an excellent idea. I already tell people that I have an auto-immune disease, and let it go at that. No on really needs to know the specifics. Most people do understand that auto-immune is not a good thing, so they have more understanding. If you tell them you have arthritis, no understanding at all. So let’s all change the name. All you have to do is say it. People, it will catch on! Just hope the doctors can catch on as well.
Wow Kelly, I loved what you said about RA, “The fact is that Rheumatoid is not a type of arthritis. Arthritis is one symptom of Rheumatoid disease.” I completely agree with this statement. This is a disease! It’s a life altering and life disfiguring disease with many other symptoms… Arthritis to me implies, pain (of course), and inflammation. But RAD is everything, and more. It means more. Some of us spend our entire lives thinging we are going mentally insane with everything that is happening within our bodies and no way to prove anything that is physically and emotinally happening to the outside world. Lately, well for the past several months, I have been trying in vain to get as much information as I can about my disease, to better understand what is going on in me and what has been going on for many many years, and still will happen (possibly). To a point that my husband is calling me obsessed, because I was taking pictures of my hands and their pain and deformity that is slowly taking over them. I also have been writing in a journal of sorts, to document everything that I go through, so in the end I may publish it, and let others know that they are not alone. As I had thought that I was for many many years. That’s besides from the whining he thinks I constantly do. It’s heart breaking to say the least. He’s a very intelligent Mechanical Engineer, but a very stupid and uninformed one at that. Im not obsessed, but I’m in constant pain, more often than not lately. Some days are better than most, but the fact is that I’m more aware of what my body is feeling and telling me. This is a disease, one that should be recognized for what it is. I just wish my husband would acknowledge and understand this for what my life has become.
Absolutely necessary!
I have dropped the “Arthritis” and simply tell people I have “Rheumatoid Disease”. This often leads to them asking “you mean rheumatoid arthritis?” Then I get to educate them by sharing that arthritis is only one sign of a proliferative systemic disease.
After reading the article by Dr. Adams I will probably use the term “Autoimmune Rheumatoid Disease”. Dr. Adams makes an excellent point by stating, “‘Autoimmune’ is one of the few reasonably avant-garde terms that has caught some viable traction in the media.”
Whether we call it “Autoimmune Rheumatoid Disease” or “Rheumatoid Autoimmune Disease” it is important to incorporate “auto-immune”.
Thank you so much, Kelly, for your hard work on behalf of all of us struggling with this devastating disease.
PS: I would love it if you could incorporate “auto-immune” into the name of your website. It would be a great place to start the trend …
I agree that the name should be changed. When I was a teenager I much preferred telling people I had Still’s Disease instead of RA because no associated stigma was present. As I have grown older, I have tried to tell people about the associated Sjogren’s disease, lung involvement, eye problems, ear problems, and all the other “hangers on” associated with RA. I am sure people do not believe the long list of disorders because arthritis implies joint involvement and not all the rest of it. I used to think the name should be changed to something with “synovial” in the name since the synovium is so directly impacted. RAD encompasses all of that so would work well.
Oh, I’ll do whatever i can to make that change happen. People look at you like you’re crazy. They (like I did) think it’s just sore bones – so get over yourself. I’ve met and spoke with many folks who feel it needs a name worthy of what it really is. So many factors are like Lupus, MS, etc- the other things that come along with, like Sjorgens – you say Lupus or MS and people go what, that’s awful – you say RA and nothing – not to garner sympathy but make people aware of how much suffering and what a life change it is and need more understanding – my own family does not get it really. It really changed my life in ways i never thought possible. Let’s make change!
I’m impressed by your website, but if you’re really serious about changing the name to RAD — why are the words “Rheumatoid Arthritis” and “RA” plastered all over your pages??? I think if you want to undertake this huge task — start at home!
1 – This blog was begun in the spring of 09. This post is one day old: Jan 3, 2012. The narrative in the post describes the process of how I’ve come to this conclusion finally.
2 – How else would people searching for RA info find the site? They can’t read our minds about the name change – RA is all they know to search for right now.
I think this is a terrific idea. And if you’re willing to be political activists, you CAN change the terminology to be more accurate.
For those of you who were teens and adults in the early 1980s, originally AIDS was known as GRID (GAY-related immune deficiency). Besides being WILDLY inaccurate as to who was at risk of contracting AIDS, the terminology was stigmatizing. Gay men fought hard to get the medical terminology changed. THEN, all sorts of people worked for:
1. Better treatments.
2. ACCESS to better treatments.
3 Awareness.
4. Fundraising for treatments and patients (it’s a hideously complex and expen$ive disease).
As a professional historian, I see a lot of similarities between the two linguistic situations. Too many people focus on “arthritis” and not on the “rheumatoid” side of the terminology. Consequently, it’s a misleading term. Also, people will not confuse RAD with any thing else (“RA?” You mean you’ve a “Resident Assistant” working with you?)
“RAD” cuts through the obfuscation and confusion. It’s precise. “RA” is not.
Let’s go for it!
Recently I was hiking with a group of friends, and going uphill left me short of breath. When I finally caught up with the group, I was chastised for falling behind by one of the fellows. I tried to explain that I have RA, which impacts both my heart and my lungs. I do have nodules on a couple of joints, so most likely I also have lung and/or heart nodules as well…and need to be sure not to over-exert and cause inflammantion. He started laughing hysterically. I know he thought I was just exaggerating the effects of ARTHRITIS, and he truly had no idea that Rheumatoid Arthritis is a DISEASE, not just sore joints. So yes, I would LOVE to see this DISEASE re-named so that those less educated on the subject are not so easily confused between Osteoarthritis and Rheumatoid Arthritis.
Tish, sadly even most people who have the disease do not know. The obvious question is how they can care for themselves when they do not. They can’t. We all need this. For so many reasons.
I don’t like the word “Rheumatoid”. When I say RA in Portuguese, my native language, my friend says “oh, Rheumatism”. We should not forget that these words have different connotations in different languages and different cultures. RA is not a privilege of America.
We all hate the name and the confusion, but I am not convinced that it is a major obstacle for awareness. How about Ankylosing spondylitis? Is the general public aware of it?
Hope not to sound too pessimistic, but finding a cure may come first than the name change. Where should time/resources be spent? Would a name change become a distraction to the awareness efforts?
A suggestion: Submit a to Wikipedia to create a page called, “Rheumatoid Autoimmune Disease.” Wikipedia does not require that the articles be peer-reviewed research articles, yet the creation of the page will add clout to the patient-led fight for better awareness! THEN, people may add on and tag their research to defend the reasoning for such a label/page. Likewise, anyone can add this suggestion to the main Wikipedia RA page as well!! http://en.wikipedia.org/wiki/Special:Search?search=rheumatoid+autoimmune+disease&go=Go
Not a bad idea!
Also, stumbled upon this site on the Care2Petition. Looks like this petition was started, but fell on deaf ears (probably due to lack of marketing, publicity, etc.). I would love to join in the fight to get this goal reached in 2012! http://www.thepetitionsite.com/7/change-the-name-from-rheumatoid-arthritis/
I just call it “THE BEAST”
RAD is a great change, but I would suggest we add one more letter and make it RAID, since it does RAID our entire bodies every day in every way – so that would be Rheumatoid Autoimmune Inflammatory Disease. OR – Rheumatoid Autoimmune Incurable Disease. Just a thought.
Thank you so very much for this website and for this community!
For this website, I think all that is needed is to add a line saying, “aka Rheumatoid Autoimmune Disease” under the title. You could even footnote it with a tag or link to some blurb elsewhere on the page or site about RA vs RAD. I agree about leaving the url unchanged for the reasons you mentioned.
“Also, people will not confuse RAD with any thing else (“RA?” You mean you’ve a “Resident Assistant” working with you?)
“RAD” cuts through the obfuscation and confusion. It’s precise. “RA” is not.”
Actually, RAD is fairly widely known as the acronym for Reactive Attachment Disorder. Just a point to consider.
I was surprised, but my rheumy no longer calls it Rheumatoid Arthritis, but Rheumatoid disease, well impressed with him!
Both of the rheum docs I’ve had called it “the Rheumatoid” & no ever the a word.
How can I help?
I think you are missing a few essential points in your desire to garner more sympathy from those without knowledge of rheumatoid arthritis by separating it lexicologically from osteoarthritis.
1. The term “arthritis” means inflammation of the joint, which is an accurate description of the pathophysiology of rheumatoid arthritis, systemic lupus erythematosus, psoriatic arthritis et. al. in contrast to the lack of clinically significant, if any, inflammation in osteoarthritis. In fact, the correct term for osteoarthritis is osteoarthrosis. While you are correct that the difference should be noted, you’re going about in the opposite direction–that the “-itis” away from OA, not RA.
2. The three terms rheumatoid, autoimmune and disease are all non-specific. Put them together and you still have a non- specific term. “Rheumatoid autoimmune disease” could refer to RA, systemic lupus erythematosus, psoriatic arthritis, retroperitoneal fibrosis, orbital myositis, relapsing polychondritis, polymyositis, dermatomyositis, SAPHO, ASD, etc. etc.
3. Of course, you are correct, many parts of the body can be effected in rheumatoid arthritis but joint inflammation is the _sine qua non_ of the disease. By the diagnostic criteria, you cannot even begin to calculate a score, applying joint counts and RF/CPP results! until you first demonstrate synovitis. This is usually the first symptom and the most recognizable symptom to the average person.
While I sympathize with your cause, I think your current plan will do more harm than good.
### primum non nocere
Just one point I think you may have wrong about what we intend to accomplish by calling “it” something different:
We’re NOT LOOKING FOR “SYMPATHY”, we’re looking for awareness, or education if you will. A pity party is far from our goal… just saying, if you want to be technical about it. The point is, names have connotations – which most people understand, more than ‘lexicologically’ understand the differences in these diseases. Besides, who makes these names? Why do they get to attribute some characteristics of the disease in the name but not others. A rose by any other name… we don’t have to be grammatically 100% correct in my opinion.
Thanks for pointing out some technicalities for us though…
Another point, perhaps joint issues are common to “RA” or “RAD”, but so are MANY other things, including many organs, so why no reference to that in the name?
A nice summary Michael of some important issues in an upcoming post – especially that joints are unfortunately not the only or most important symptom and that treatment is more of an issue than sympathy…
While I intend no disrespect and I understand why you said what you did,let me ask this. How many people confuse what our condition actually is? While certain terms are considered non specific, we are tested for a very specific “immune disease” which brings me to my next point. What made them run tests for this in the first place? Did they run test for an “immune arthritis” or an “immune disease” which means RA, Lupus etc.? Do you know why my doctor ran these tests? The joint pain was minimal. I felt like I had the flu off and on for months. I suffered from fatigue, fevers, body and muscle aches and the joint pain was the icing on the cake.My mother is a very smart woman and even she had to be educated about what RA actually is and can do to a person. I don’t see how this can be doing more harm than good. It’s actually to raise awareness to people who are clueless about this disease. Arthritis plays a part but is NOT the whole illness.Most people are not familiar with the terms ‘specific’ and ‘non specific’ and so they only go with what they know which is the word ‘arthritis’. If you had a ‘specific’ disease which most people kept categorizing as something else, wouldn’t you want them to understand it, and get to know the facts? Not just so they understand you, but if it should happen to them? That’s the whole thing in a nutshell. Pity and sympathy is nowhere on the agenda. I feel for the newly diagnosed who are scared, confused and don’t know where to turn and aren’t properly educated about it. That’s how I feel about ‘specifics’.
Too right! I don’t have five separate diseases, I have a wonky immune system that manifests in many different ways.
I wished the name wouldn’t changed. Like everyone else I too have experienced many people that confuse my illness with arthritis. I have tried to educate many times only to be told I need to stop all of my meds as that’s what’s making me I’ll.
Sorry tip I meant to say WOULD change!
Kelly, I agree that we need to improve the name of our diseases. However, as an RN, …RAD is reactive airway disease, aka asthma. Most MDs will abbreviate anything, we are constantly bombarded by ” do not abbreviate lists” (,methotrexate for example).
But we do it anyway. I’d hate to be confused with asthma. I’m not sure if medical billing uses RAD already I tell docs and nurses I have RA, they have very little info, and are shocked when I rattle off our /my meds…steroids!, Rituxin! Narcotics! Oh my!
Education needs to start in medical and nursing schools, a short film, perhaps.
Thanks again for all your hard work, it is truly appreciated.
,
Michael,
Some thoughts about your post…
First of all, your choice of the word “sympathy” is inaccurate. What we want to garner is better understanding of the severity and complexity of our disease so that others will not minimize or dismiss our report of symptoms that greatly affect our functioning and our lives. This has far-reaching effects on our work/careers, relationships, etc.
Second, regardless of its technical definition, “arthritis” has become synonymous with “aches and pains” in this culture. To try to get the population to make a cognitive shift in terms of how they define and perceive “arthritis” would be a ridiculous and futile task.
Third, if “Rheumatoid Autoimmune Disease” could refer to all of the diseases you listed, it would follow that “Rheumatoid Arthritis” could also refer to said diseases.
Fourth, regarding your point that “joint inflammation is the _sine qua non_ of the disease,” please refer back to my second point above. And, further, diagnostic criteria are frequently modified on the basis of new research and conceptualization. Perhaps it’s time the diagnostic criteria for RAD were reexamined…
So, as you say, first do no harm…..
Barbara Cloues, Ph.D.
I agree!
YES for the name change to RAD!!!
Thank you for pushing on this Kelly. It is so important.
Thank you for your support Christina!
I completely understand the motivation and reasons here, but I serve a population that has a variety of special needs. Reactive Attachment Disorder is common, especially among kids who have been adopted. And, yep, it’s RAD. If I were to start using RAD to refer to RA, it would become incredibly confusing.
I certainly don’t mind that y’all will proceed as planned – just explaining why I’m not joining you on this one.
Personally, I usually say “Rheumatoid disease.” Both of the rheumatologists that I’ve been a patient of personally, and others I know professionally, call it that. It’s a phrase that appears on older literature and still is seen in some modern scientific writings. The term “rheumatoid arthritis” was popularized before it was known to be a systemic disease. It doesn’t really matter whether people use RA, RD, RAD, or RAID as an abbreviation, the critical thing is to stop saying that Rheumatoid disease is a type of arthritis.
I have decided than when I talk to to RA I start with “I have an immune disease called RA which happens to have arthritis as a main symptom” I get more questions that way and am able to educate
Ahhhhh… and there it is. When you say, “I have …. arthritis”, all they hear is arthritis and conversation over. They think they understand. But when you mention you have an auto-immune disease (or something of that nature like Rheumatoid disease), they ASK QUESTIONS AND LEARN ABOUT WHAT YOU HAVE. This is THE most important thing that can be done for awareness IMO.
And it doesn’t matter the abbreviation and if there is already an abbreviation for another disease. At least, I don’t see the problem. We won’t say, “I have RAD”, we would say, (at least I would), “I have Rheumatoid Autoimmune Disease” (though I like rheumatoid disease better)
Rheumatoid Inflamatory Disease works for me. Look at it this way. RF and immune system cause multiple systematic inflamatory reactions. While joints are most common shall we list, cardio vascular inflammation, inflammation with in lung tissue, connective tissue inflammation of ligaments and tendons. What else have I missed? The facts are, that because of the word arthritis being so notably associated with this, there is a general misunderstanding of the severity, the complications and most importantly the increased mortality rate. This is where the RPF and other doctor and patient advocates come into play. It is not about sympathy, it is not about complaining. It is about raising awareness to fight, conquer, and improve the lives of the patients and their family members.
Yeah I got it again tonight…When I was asked what was wrong with my arm and I informed them that I had Rheumatoid Arthritis, I get the response that I am too young to have this “arthritis”… (well hell I wish someone would tell my body that… and if it were just ARTHRITIS THAT COULD BE THE CASE) However, I politely informed the older man that I have an autoimmune disorder that was attacking my entire body. It sucks that I have such an unpopular condition with such a popular name (that everyone’s grandma has.) Just needed to vent but something has to change or noone will ever have a clue.
I like the idea of Rheumatoid Disease. Anything that takes the Arthritis misnomer out of it. I am SO tired of having to explain that NO this is not your Grannie’s arthritis!!!! Grrrrr. And if thats how the drs term it I think it’s good not to get it confused with anything else. Everyone is already confused enough about this menace!!
One of my RA(D) friends sent me this to read. Despite having had RAD in my family, I won’t be signing on to help with your cause, but only because I need to save my battles for my QI diseases (psoriasis, psoriatic arthritis & Crohn’s). You have me thinking though that a name change for Psoriatic Arthritis may be in order as well. We gain somewhat because PsA is less common and the unknown part of the name confuses people, but they still get hung upon that arthritis part. I think I’ll be mentioning the idea to the National Psoriasis Foundation.
Oops. make that AI diseases, not QI!
Ultimately ALL autoimmune diseases that are classified as “arthritis” SHOULD be given proper names, now that we know that arthritis (or joint involvement) isn’t the whole story. One battle at a time….
I think that RAD is already in use by an advocacy community as a few comments have noted above. There might be some confusion with the Reactive Attachment Disorder community. RAD is the accepted abbreviation for that disorder including in the DSM.
There will be another post on this soon to address some specific reasons for the change, but as stated above, the acronym is not the issue. We don’t care if people still say RA – the word autoimmune starts with “a” also. Barbara could comment more on this, but I believe the DSM is a psychological book – we are working with the ICD-10 (for medical diagnosis codes) to establish this change. The issue is not the acronym but the name – the noun needs to be changed from “arthritis” to “disease” to correct the inaccuracy. Arthritis is a symptom.
Also, as stated, “RA” stands for many different things already. This is why you can’t really have much success by googling “RA” – it too is used for various things. I guess you could say that there are only so many letters.
I whole heartly agree to the name change!!!
Tim
There are thousands of comments on this site like it, but a new comment from Lisa which is a perfect example of them here: https://www.rawarrior.com/3-reasons-to-stop-saying-complications-of-rheumatoid-arthritis/?show=comments#comment-169017
Kelly, you are so right. The main thing is to get the word “arthritis” out of it.
Today my mobility scooter arrived. So I can get out of the house again & go to parks. The delivery guy was really sweet. I told him how I’d gotten really sick on my honeymoon a year ago & couldn’t walk much anymore & how this scooter would help me.
Then he asked what I had.
I said, “Rheumatoid Arthritis.”
He said, with a sweet smile, “I heard of something that really works for arthritis. Dancing!”
He was just a kid, I can’t be angry with him. I took a moment to educate him. Then when my husband came home we unpacked the scooter.
We have to make this name change happen. In the meantime, I think I’m just going to stop using the word “arthritis” and say Rheumatoid Autoimmune Disease.
Thanks again Kelly for pushing on this important issue.
Of COURSE I’m sorry you have RA or need a scooter to use at all, but thank God you have one now! And a wonderful husband to go out to parks with!!
I feel the name has to be changed in this disease. Oct 2010 I lost my fiance to it, if I had realized it was more than arthritis I certainly would have done more. He had many issues underlying from it that caused his death and our IGNORANCE to what he had and it not being explained took his life very fast. To my dismay in 2007 I had started with unexplained pain and until after his death didnt know I to had RAD and it has happened fast. I miss him dearly and would give anything to have him back, it actually upsets me that now I know all this to late for him, but thank god I do. Sometimetimes the emotions get the best of me and the guilt though. Sounds ridiculous I know. The name RA is NOT at all accurate and to save peoples lives HAS to be changed.
would love to take out the arthritis out of ra but RAD is used for kids with reactive attachment disorder which is one of the sadest sickness out there these kids can’t except love or show it and can be very volent I have friends that adopted a daughter who has this and it is very sad to watch what she has gone through can we find some other name or lettering for this
Hi Pat – as I’ve said several times, the acronym does not matter to me – keep using RA or use RAD or RD – it does not matter. RA also stands for several things which is very obvious if we google it.
I agree with you Pat. When I saw the letters RAD my heart sank. I inherited my 5 children with RAD. RAD is sooo devastating it has caused me to have PTSD and triggered my RA and Fibro. I didn’t have any disease or disorder until I adopted my kids, my doctor said the stress of RAD and raising a child who is a sociopath is what began the onset of RA and Fibro. I am so torn because I also agree with Kelly that the name needs to be changed to autoimmune and I know she most likely doesn’t understand reactive attachment disorder and that isn’t her cause. But when I start to think of how I am going to have to explain RAD- reactive attachment disorder and then RAD- the autoimmune disease, I just want to throw my hands in the air (figuratively of course because RA won’t let me actually do that) and cry. Both the disease and the disorder aren’t fully understood and it’s like running in circles trying to explain it all.
There are at least 2 other rare things using RAD as an acronym apparently and the same with RA. If you google RA you will not find mostly rheumatoid – but a couple of other things that are more commonly discussed. Not to repeat what is written in other comments, but the important thing is to change the noun from “arthritis” to “disease” now that we know that is more correct and for numerous other reasons not discussed in this post. Please stay tuned for posts about that soon. — this post was merely my expression of support for the concept & sharing my personal decision process. Personally I do not care if the initials/acronym is RA, RAD, RAID, or maybe best, RD – that will be sorted out as we work through this.
Hi RA Warrior. I read this blog after getting the link from the NRAS forum HU. I posted it on the Living With Arthritis forum on the UK’s Arthritis Concern – and what a torrent of different, sometimes very heated views came rolling in. The main consensus on the AC site (as opposed to NRAS) was that it was a red herring and pain is pain. I think some of the Psoryatic Arthritis sufferers felt somehow hurt but I pointed out that if it was called RAD they would be included under that broader sweep or could refer to themselves as having PAD. Some RA sufferers were very much in favour of name change but many felt that this forum is large and very well used and to move away from the over arching banner of arthritis would lead to these charities, doing such an important job for many, being disapated in some way i.e by the lessening of funding. Personally I still believe a name change would be a good thing but I understand the dislike that this idea was met with amongst people suffering from the many other forms of arthritis – principally PA.
Honestly, I knew I was being a bit controversial but hadn’t expected to stir up such a storm. Quite stressful strangely it brought on a really nasty flare for me – or perhaps that was just a coincidence but I hadn’t expected to be met with such exasperation!
In contrast I think most on NRAS were very much in favour of the name change. Anyway my GPs all call it Rheumatoid Disease so I think even some in the medical profession prefer to omit the arthritis part when thinking about their patients.
I just thought you might be interested in getting some UK feedback
Warmest,
Christil
Christil, there are several interesting things to notice here & a couple of mis-conceptions as well that I hope to correct asap such as thinking that “pain is pain.” It’s not. Some is a sign of damage or danger. Pain and sympathy are not the issues – that is the point. This is a disease and as you say many doctors already want this change for several reasons. Pain is not the issue – the disesae is. Please read the very recent post about treating the whole disease.
I’m just home from a long car trip over night to get rituxan infusion at double rate as I’ve been posting here elsewhere & while i’m tolerating it well, the trip & day in a chair are very hard on me & i need to rest with a harsh schedule the next few days – and just after getting robbed the other day which has taken a lot of time to settle – ANYWay, some imp things like this will be on hold for a short time & I’ll present more very soon. ty for being interested in this discussion.
Please also refer people to the following document if you are sharing my post which was only 1 blog post out of well over 600 articles and expressed an editorial opinion, which I realized did not present evidence. Evidence abounds & much more is to come on this as I said in the post. https://www.rawarrior.com/wp-content/uploads/2012/02/Rationale-for-Dropping-the-A-Word-from-Rheumatoid-Disease.pdf