i read today a blog by the Rheumatoid Warrior an American lady, she has been campaining to have the name of RA changed so that the great public could recognise and understand what we all have.
The US group have decided on
Rheumatoid Autoimmune Disease RAD
The arguement is as soon as we say arthritis everyone has it even the budgie; we are then on the back foot trying to explain that ok we ache we hurt BUT we get ill. As soon as the RAD starts its revolt the fatigue comes on that burdening weight on your shoulders which hurt like hell, your feet hurt down to the smallest joint on your little toe. Your muscles and tendons hurt and if your inflamation is very high it can effect your liver, kidneys, heart and lungs, You may get secondary dideases srjogrens, Lupus and a whole lot of other nasties.
They on the otherhand have osteo in their knees yes it hurts but i'm sorry your not ill. My sister has osteo I have argued this point and won.
So when people ask whats wrong with you answer....
RHEUMATOID AUTOIMMUNE DISEASE. I expect the questioner will then say whats that?????
Well..................................
Have a go, RAD that's all folks.
Tricia - P xx
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Hi my specialist & Dr have both agreed to name my Rheumatoid as "Lilly's Rheumatoid Autoimmune Disease " because I do not tick all the boxes .......but we are still fighting
Get to know tomorrow evening what other super drug I try next .. been on Hydroxy for 7 months .. MTX for 6 months ... no results yet can not get my inflammatory levels down x
Yes. I think the "arthritis" bit is confusing too. Severe OsteoA can be equally horrid, but in a different way so would be good to make the distinction between the two diseases. P
yes, I'm now on to this, I think I will write to our MP ask him to take the battle forward, he does little else mmmmmmmmm naughty be nice to polititions Tricia. lol.
Great idea! I also get annoyed when in on crutches and wrists supports that when I tell people I have RA they say oh my mum has that in her knee.... yes but RAD explains it so much better!!! Great stuff. We could maybe go with MAD......multi autoimmune disease,.... joking!xx
Hi Tricia, most people confuse osteo with RA and the times I get told it is an old person's disease (thanks very much!!) and then I have to explain, yet again, that it is my immune system attacking me and nothing to do with wear and tear on the joints and even children get it. Sometimes feel I am hitting my head against a brick wall. Perhaps NRAS could start a newspaper campaign to highlight the difference between osteo and RA? And have a competition for a better name for RA. Lavendarlady x
NRADS doesn't sound too bad does it? Actually it sounds quite radical (re the RAD bit!) so yes I like it because I'm a radical artist. I'll be trying it out next time I'm hobbling or trying to avoid having my hand shaken and am called on to explain.
But I do agree with Polly that Osteo is probably as bad in pain terms when at its worse and it doesn't only affect older people either - you only have to go on the Arthritis Care forum to learn that - and also to find out how debilitating it can be at it's most severe. So I think we have to be a bit careful about dismissing OA as a minor ailment compared to RA - it's just a very different disease which requires different medication and comes from a different place to RA that's the main thing.
I do have to remind myself of this because like everyone here I get really fed up with many people's attitudes of "my auntie has that in her thumbs" and "have you tried avoiding nuts?"etc. But then again I think people with severe Osteo probably think that we are relatively lucky because there's a chance we might go into remission on our drugs whereas with Osteo or even MS there isn't really a drug that can stabilise those diseases? But yes to a move away from arthritis please because it's easier to explain starting from scratch than to explain why it's different to what auntie's got in her thumbs! TTx
I also read the warrior - she is a great blogger.
Totally agree with the name change - i would be keen to keep arthritis out of it because most people have preconceived ideas when they hear the word arthritis and its frustrating dealing with that as well as the disease itself.
I am not dissing OA but they are two completely different illnesses and their treatment is also very different - love The RAD. It actually sounds like a cool disease. We know its not but.....
Would NRAS take it further do you think? Not much of a logo change and what publicity they could garner from a name change.
Y'know in the last 6 months i am nearly sure i signed a petition for a name change rheumatoid arthritis - could have been the american site.
Yes I read that by the Warrior, great blogger, even though I don't always agree with everything on her site can be quite negative experiences, there is some great info and advice.
Would love to see the name changed to RAD. Sick and tired of everyone having 'Arthritis'. Only this week, I was told my sister in law was being tested for arthritis, it was said to me, as if she would have something in common with me, I said what tests? and was told Xrays of course, Oh I give up!!! Grrrr!!!
Gina.
I used to be an avid reader of ra warrior but find now that since I have found this site I prefer this one... I feel as if I have made friends here, the warrior site is quite negative and very U.S based. It's nice to have so many fellow sufferers her in England (sorry to all you abroad, love you too). plus with this site I get all the morning blogs and questions sent to my e mail so I never forget to read them.
This is a topic that comes up rather frequently, and we can understand the frustrations you all feel about the confusion between OA and RA that often occurs.
Unfortunately as 'rheumatoid arthritis' is a worldwide medical term it is very unlikely that we would ever have enough impact to get it changed officially.
However, we do often say on the helpline if you personally feel happier referring to it as rheumatoid disease or rheumatoid autoimmune disease, as suggested above, then it can sometimes make it easier to explain the condition to the general public and avoids the confusion with wear and tear 'arthritis'.
Every journey starts with a single step..... maybe it wouldn't be easy, and take a long time & maybe it wouldn't work. But if it did, this simple change would have a positive and motivating impact on thousands of people as being misunderstood is a real problem for us. The Spastic Society changed their name to Scope because it was becoming a negative description, and we no longer refer to Mongolism but to people with Downs Syndrome - so there are example of name changes working. Could NRAS please rethink this policy & maybe reconsider whether it should have a higher priority as a campaign? Maybe ask members what they think, and whether they'd be prepared to lobby local hospitals and research bodies.
Mm I like the RAD dicription, but as I also have OA , and getting treatment s that help both are confusing and the fact that treatment for RA can cause Oa to get worse , as it did in my hip, luckly it is only in 5% of people ,I was just one of those 5%. And if people ask me I say I have RA and OA they usually just look at me strange say Oh Dear and I not really sure they know what either mean lol,
I agree that the name should be changed and RAD sounds good. Arthritis is so misleading to the general public. If I had £1 for everytime I have heard `oh my grandmother/father had that' when I know they had osteoarthritis, I would be very rich.
I think most consultants agree that the name should be changed. It would be interesting to have a campaign to change the name which I am sure would make the general public realise what a horrid disease this is.
A very interesting idea xx
HMMM, Not a bad idea, would surely generate more conversation.
How about if some of you try starting a support group where you live, or at your hospital, if the hospital would loan you a conference room for a couple hours. I'd be glad to help you get started. Been having one here since 1996 sponsored by the Arthritis Foundation. Which means they supply me with all the pamphlets about each of the many Rheumatoid Diseases.
Give it a thought, girls, you would love it! XXXLoret
I am fairly new to this site.....Did not know that you all are in England! I am in Colorado, nice to be connected with all of you I also am connected to RA warrior. but I do feel there is more interaction with this site. There is another gal from the U.S on facebook, her name is Arthritis Ashley. She always has very positive posts on her fb
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