...or Rheumatoid Auto-Immune Disease but something at least to suggest it is more than " a bit of arthritis "...does anyone know of a similar campaign in Britain...
There is a campaign in USA championed by Rheumatoid A... - NRAS
There is a campaign in USA championed by Rheumatoid Arthritis Warrior to change the name of Rheumatoid Arthritis to Rheumatiod Disease...
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rab333
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There is an open petition on the No 10 e-petition web site about changing the name of RA - but only 306 people have signed. I have asked NRAS about it as well but their view is that it's not a priority with more important things to tackle. Not sure I agree. I also asked to have a poll put on this site to see whether others thought it important, but NRAS/HU didn't agree to that either.
epetitions.direct.gov.uk/pe...
I think it was a great idea of yours to ask NRAS to get involved and very short-sighted of them to think it was not a priority...I think we need to start it at grass roots level by changing the name ourselves and not referring to it as RA and asking consultants and nurses to do the same...
Thanks for the link ...I have added my signature...don't think it will do much but it's a start...
I think it's a a great idea - I have added my signature. People just don't understand! It's like Type 1 Diabetes being a completely different condition to Type 2 Diabetes - 1 is auto-immune and the other is much more to do with lifestyle and old age!
I would say that's a good idea. Maybe people wouldn't keep coming back with "Oh yes I've got a touch of arthritis too!" Aarrgghhhh!!!!!!
Carolyn
rab333 in reply to
It is bad enough to suffer the disease but there is a lot of misunderstanding around it and the name does not help...
siskin in reply to
My response to that is to say, something like "I hope you have the infusions because it can cause serious damage" or
"Yes Mmm Rheumatoid arthrits is a serious disease"
Makes them think.
I raised this subject on the Arthritis Care forum a while back too and the feedback was very divided as you'd expect from a site with Arthritis as the umbrella symptom. Many RA sufferers seemed to favour it but the PA sufferers didn't and some people got quite agitated that it might affect the funding of organisations such as AC and Arthritis Research by ghettoizing the different diseases - and that we shouldn't feel the need to stress the autoimmune part - suffering is suffering basically - emphasis on commonality not on difference.
It was also pointed out to me that many with OA suffer just as much with every joint affected and less drug treatments available to them and are just as negatively affected by the assumption that it's "just a bit of arther".
I pointed out in return that Lupus sufferers and people with Palendromic Rheumatism still use the AC site despite the term Arthritis not be in their disease title.
Although this site is like my second home (but a lot tidier!) I learned quite a lot about other forms of arthritis by posing this question on the AC site. My GP just refers to it as Rheumatoid Disease but lots of longstanding members of the AC forum felt that it was depressing to accentuate the D word - they are struggling with disability and pain every day and don't like to have to say this word as it is so negative.
I concluded that there needs to be a lot more education about the diseases that arthritis covers - a change in viewpoint about what having any kind of arthritis can mean - the severe forms of all these conditions needs to be recognised and much more publicity needed to shift the public perspective.
For myself I try and call it Rheumatoid Autoimmune Disease now myself because it wakes people up a bit if you leave out the arthritis part I find. If we all just do this as much as possible a name change will probably just come about anyway in the longterm? TT
rab333 in reply to
Arthritis is actually only a small part of Rheumatiod Disease as I am sure you know...but others dont and therefore they treat it lightly and think if you rub a bit of cream on it that will make it better...I am doing the same as you and my wife also refers to it as Rhuematoid Disease as that makes people listen more and not just dismiss it because they already think they know what RA is...
PS and I should have included AS in there too - sorry!
It'd be interesting to talk about priorities, although it doesnt apply to me, it seems that focus on early diagnosis and treatment are urgent ones.
I agree with a name change. My husband tells people that I have a bit of arthritis, who hasn't. Maybe if the name was changed, he and others maybe more understanding when you cannot hardly climb stars, or when I have trouble driving far because of the pain in my hands, elbows and shoulders. I know that it may not be a high priority unlike treatment, but I think life would be easier if people did not hear the word - Arthritis- oh my mum has that!!
does it really matter what its called ?
i couldnt care if its called mickey mouse syndrome as long as they get a cure for it.
ive had rh a, re a, poly a, and anky spon for more than 20 years.
I think it does matter for reasons I have stated earlier...but it might as well be called Mickey Mouse syndrome because that it how seriously some people treat it...
You see I find it worrying that you say that arthritis is only one symptom of RA as if it was a light symptom in itself. I know exactly what you mean about the dismissal but I think it's also appalling for people with severe OA too that their disease is minimised in this way?
And the other side of the coin is that if we are all in it together then there's more chance of us fighting the public's perception about what a "bit of arthritis" actually involves for many. I mean we don't say about people "well they've got a bit of cancer" do we so why is it said about a disease that causes people such huge mobility issues, depression, exhaustion, vulnerability to other diseases? I It's more unusual but younger people can also get OA and also suffer from the other symptoms because of being in awful pain all the time - as do people with Lupus, AS and many of the other diseases that come under the banner of arthritis.
I think the problem is that until it affects you or your loved ones or friends it's hard to relate to and people mostly just don't want to know. Personally I find that RA can be better described to people as an autoimmune disease for which we are taking a chemo drug and if i say this it does make a big impact. If we can try to educate people then they will perhaps think, as I used to do, "oh yes that was that horrible disease that killed my neighbour?" rather than "oh belt up and rub some cream on it". I remember when Daniel got JRA on the Archers and that was my wake up call to how this disease affects people of all ages including children. Getting RA onto medicine programmes or soaps would raise awareness far more effectively than a name change I feel - although I'm not denying that might help as well.
If my husband explained to people that I had a bit of arthritis I would file him for divorce Ozzy!
rab333 in reply to
I think you have misunderstood what I am trying to say...I do not say that the arthritis part of RA is any lesser a part than all the other problems that may come along with RA...I am simply saying it is the part that people hear and think they recognise and therefore don't see the whole picture. I am sure people with OA suffer as much with pain but I would guess that if you asked the public which was worse OA or RA or which they would prefer to have , if they had to have one, they would choose what they thought was the lesser of the 2 evils...RA.
I think it's the other way round Rab although I do agree that the arthritis part of RA is the bit that often gets us misunderstood. I have often had people ask "oh now which one is the bad one I can't remember?" and the bad one is RA because the other isn't systemic as much and also everyone will get it to a greater or lesser extent whereas they won't get RA unless they are very unlucky.
The point I'm trying to make is that if NRAS and other organisations related to RA were to change the name to RAD then this could stop organisations such as Arthritis Care and Arthritis Research from being so proactive for RA sufferers by fragmenting us all? Also the point that many people on the AC forum made was that there is more power and clout in numbers so if everyone involved with anyone with any form of arthritis started campaigning to educate the ignorant about the various forms of arthritis in the same way as cancer charities successfully raise awareness about the many very different types of cancer, we would hopefully generate more compassion and understanding of what having any form of arthritis can do to a sufferer?
So I just wonder if the name change issue might not be something of a red herring as many people with RA later go on to develop other types of arthritis and there are so many overlaps with all the different autoimmune conditions too. Also name changes cost money that could be better used elsewhere? Tilda x
rab333 in reply to
Maybe we don't need Arthritis care and Arthritis Research to be proactive for RA, maybe they should focus on OA, AC and other purer arthritic ailments and let NRAS focus on RA...I dont believe that RA is a true arthritic condition in the truest sense of the word, although, it does have an arthritic component, it is primarily an auto-immune disease and I believe that is what we need to get across, as for cancers, all cancers are caused by cells not behaving as they should, the only difference is in the parts of the body where they are found...
PS also I've heard just as many people say "oh my mum suffers from a bit of rheumatism too"!
Yes, I've sort of stopped using rheumatoid or arthritis now. Sometimes I just say I have an incurable autoimmune disease, and go on to explain that AIDS is also an autoimmune disease, and that shuts people up! Nobody says that their aunty has a bit of that in their thumb....
But I've been mulling over the question rab333 posed about what people would go for if you offered them a choice between having OA or RA. And I think that I prefer RA! At least there are some things that slow it down, and with OA ther's nothing but pain. Isn't that weird. Does this mean I'm finally getting adjusted to having this blasted thing? Px
I see what you are saying but RA is incurable whereas generally OA affects the larger joints which can be replaced through surgery and in effect cured...
Blimey this subject of name change brings out some strong opinions - I haven't been back on AC since I raised it because some of the old hands got very fierce!
I hedge somewhere between what you are saying Rab and what those people on AC said. I take your point but then apart from OA there is no form of pure arthritis - it is simply the common denominator in a whole lot of conditions from Stills to RA to AS to PR - and I thought it was rather amazing that all these people just helped each other whatever form of "arther'" they were suffering from. Although I couldn't cope with it either because I couldn't keep tabs on everyone's histories or names - there were just so many stories. Having lived in a small closeknit community for many years I got agraphobia on there - I need to know who's who!
I won't be signing the petition but I will keep banging on to anyone and anyone who remains interested enough to listen (not many) when I'm asked why I'm hobbling, how I've managed to lose so much weight, why I'm asking someone to unscrew a bottle etc. I think the fact that we are on such powerful drugs is actually what makes RA worse and as Rab says joints can be replaced but blood and internal organs and flu-like exhaustion cannot. TTx
rab333 in reply to
I Don't wish to demean any other forms of arthritis and am happy to be included in any groups and on any forums with other arthritis sufferers, but I just feel that since being diagnosed with RA 2 years ago , I have came up against a lot of ignorance surrounding the condition. I was ignorant myself to a great extent, so I just feel that a name change would be the first step toward educating the public,friends,family and employers that there is more to RA than arthritis...thanks for taking part in this wee discussion...
Great discussion! As a summary, the defining factor between OA and RA is exactly as stated above, Joints affected by OA can be repalced, Joints affected by RA are the smaller joints in the hands, feet and spine, some can be replaced but not to a great extent, and the RA affect most internal organs, which OA does not.
Referring to RA and other auto-immune diseases as "an incurable form of arthritis, so I'm on some strong Chemo-therapy drugs", brought the comment, "Oh, I didn't know arthritis can be treated with drugs" Well then, we can get into a teaching mode!
The name change might help, over about 3 generation changes!
Excellent blogging, folks!! Loretxxx
rab333 in reply to
It's good to talk...
change the name why?. shows they lot of time on their hands. RA is evil its not a disease. its more like a illness of the bones a disease makes it sound like you can catch it of people, and thats not its like why break it if its not broken
Here is a definition of the word disease...A disease is an abnormal condition affecting the body of an organism. It is often construed to be a medical condition associated with specific symptoms and signs.[1] It may be caused by external factors, such as infectious disease, or it may be caused by internal dysfunctions, such as autoimmune diseases. In humans, "disease" is often used more broadly to refer to any condition that causes pain, dysfunction, distress, social problems, or death to the person afflicted, or similar problems for those in contact with the person. In this broader sense, it sometimes includes injuries, disabilities, disorders, syndromes, infections, isolated symptoms, deviant behaviors, and atypical variations of structure and function, while in other contexts and for other purposes these may be considered distinguishable categories. Diseases usually affect people not only physically, but also emotionally, as contracting and living with many diseases can alter one's perspective on life, and their personality...
RA comes into that category and is therefore a disease but not inherently evil.
I think the phrase you were looking for is : " if it ain't broke don't fix it..." but part of my point is that it is broke...the name (RA) does not describe the disease...
I think there's a difference between dictionary definitions & common use of words - and people often view diseases as something you can catch so I do understand why that might not be the best word. But at the same time it does show that it's not just something we've made up but a real thing that needs treatment.
And names are important - I really remember how relieved I was when I was first diagnosed as it gave my problems a name, up till then I just didn't understand what was the matter and thought I was just going a bit nuts. Sadly I soon realised that a) it was a rubbish name that didn't describe what I had and b) nobody else understood the name either.
So although I'd never suggest that we divert money or scientists time away from research into treatments & cures, I do think that it's a good use of campaigners time to try to get better understanding of RA. And without a name change you'd have to explain it to everyone - but if the name was better then it would be much more self-explanatory. To me it would be better if it were called something meaningless like Munchkin's syndrome or a name that described what we had a bit better. And maybe a first step towards that would be to drop the A word (plus the fact that my grandson is called Arthur, so I don't like the association!). Polly
Couldn't have put it better myself...
in reply to helixhelix
Good one, Polly!
This is an entertaining debate! I keep swapping sides!
I think about 1% of the UK have RA. And lets imagine that many of their families don't take it seriously or help around the home.
And lets assume that employers don't take it seriously either. Or the government.
Basically that's still only a bit more than 1% who really know. So a lot of energy could be wasted on people who choose not to listen anyway! And who believe they are always right.
So, lets stick with what we know (RA) for now. And learn some good responses to naive questions.
eg Oh, poor you/your auntie/your grannie. Does she have Chemotherapy drugs like me?
eg Does it make her eyes and throat really sore too?
Any more ideas out there? What have you used to shock people into understanding a bit more about us?
Doesn't matter what it is called, the condition remains the same - rheumatoid arthritis.
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