RA to be changed to RAD - your thoughts?

Mat48
Mat48 Member Posts: 1,161
edited 5. Feb 2012, 12:43 in Living with Arthritis archive
http://rawarrior.com/we-refuse-to-be-mislabeled-updating-rheumatoid-arthritis-ra-to-rheumatoid-autoimmune-disease-rad/

I thought this was interesting as a point of discussion on this site. A lot of RA sufferers in the UK seem to agree that a name change would be a good idea because the arthritic element is misleading because it is only one aspect to the disease so many sufferers are pushing for the name to change to Rheumatoid Autoimmune Disease.

It would be interesting to know what people on this site feel about this. Does it bother those of you with RA that people tend to focus on the arthritis rather than the systemic autoimmune nature of the disease I wonder? And what about those with OA or other forms of inflammatory arthritis who also have many other symptoms that are just as hard to live with as the arthritis? Apologies if this has been raised at all here already and you are sick to death of the subject but I haven't been here for a while. Mat
«13

Comments

  • Poppyg1rl
    Poppyg1rl Member Posts: 1,245
    edited 30. Nov -1, 00:00
    Hi Mat,
    You've raised a very interesting point, It isn't common knowledge to most people what exactly RA is, indeed hardly anyone I know had even heard of what I suffer from PA. one of the main statements I get given are from well meaning people who exclaim 'you're very young to have arthritis!' etc so information regarding all aspects of Arthritis should be widely available.
    However, I must say and this is my personal view Mat, that I dislike being pigeon holed and labeled with PA, if anyone asks me now why I'm in a wheelchair or scooter I just say I have bone problems, I find people tend to leave it then, and I don't have to engage in the usual questions and lengthy explanations about my treatment etc.
    I do agree that knowledge and understanding of arthritis is a good thing, for us and the people caring for us. Whether a name change will make any difference or change peoples perception of arthritis I can't say, but it is good that all aspects of arthritis are being brought to people's attention.
    Nice to see you Mat, hope all ok with you? Take care X
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Hi Delboy and Poppygirl thanks for replying. I guess if its just a question of semantics it's a waste of energy differentiating too much but the fact is that if you tell most people you have RA it's the arthritis that people sieze hold of and yes you get the "you're too young for that" and "oh my friend has that in her thumbs have you tried quitting tomatoes yet?" and all sorts so it is easier sometimes just to say you've sprained a wrist etc - although both simultaneously - which is the nature of RA- tends to raise eyebrows!

    I think Rheumatoid Autoimmune Disease might be a good shift because the fact is that it's the systemic nature of RA that is hard to bear and the joints are just one symptom of RA so focusing on the arthritis when you are feeling generally lousy and stiff all over isn't that helpful a lot of the time. All these arthritic conditions are horrible and need bringing to public awareness far more - in the same way as cancer has been given such a high profile with the pink ribbons for breast cancer etc. I don't find people quite as ignorant as you have said Poppygirl - but pretty close - and often get "oh is that the bad one - or the one we are all going to get then?"

    The thing is that a lot of people with one autoimmune disease tend to get others it seems - and so a stress on the autoimmune side of inflammatory arthritis might be good because it would help employers and others understand that it is systemic - hence the overwhelming fatigue and variability of this disease from one day to the next - bringing so much uncertainty and invisible suffering to people who may not have crippled joints at all but may still feel incapacitated by the flu-like ache and tiredness and also by all the rubbish the toxic drugs we take bring with them? Mat
  • nanasue
    nanasue Member Posts: 465
    edited 30. Nov -1, 00:00
    Hi Mat,

    I agree, that would be a good and more appropriate name change. When you tell people you have RA they just assume it's the same as OA and is just your joints, then you have to try to explain it's more than that but they still don't really understand and just think it's arthritis. I've always thought it's not really the right name to describe this horrible illness and all that comes with it and I think there should be an information campaign to the wider public as there is with other illnesses so they can begin to understand what it's like for the quite large numbers of us who suffer from it. Sorry to go on but it is something I've had problems with and feel strongly about.
    Hope all is good with you.

    Sue x
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Ps and thanks for asking Poppygirl yes I'm fine. Half asleep today because the dog threw up in the night - but apart from that and general stiffness and still not being able to clench my hands or bend my wrists fully I'm okay. Had to come down on the Methotrexate because of my liver function being raised but it's settled again now so hoping to move up a dose again tomorrow. How are you? Mat x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    It's an interesting thought. I alwys tell people what's up with me and explain that it is an auto-immune based disease (well, one of 'em is! :) ) because people are generally unaware that RA and those like it are caused by such a thing - and why would they know? People are aware that they have an immune system but often don't realise how it can turn against one. I think that changing the label to RAD is neither here nor there, it's just another label, but whether it would change any understanding is a moot point. Until we shift the perception of arthritis being the preserve of the elderly we remain on a hiding to nothing. Perhaps a better label for all of them is 'Arthritis Can Strike at any Age Disease' - ACSAAD. DD
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    I'm in two minds about labels also DD but I also totally agree with you that it's better to try and educate where possible ourselves. Some people know about RA and other inflammatory arthers so we shouldn't assume that we will be met with ignorance but neither should we be too hard on it when we are. I know NRAS do a lot to try and educate the public that RA is not just arthritis and doesn't only affect people the elderly but can hit at any age with a poster campaign etc. When I go to physio in the hospital there is a little AC card on the window of reception saying "Too young for Arthritis? - then think again." So it's obviously out there but needs much, much more emphasis put on it - that card needs to be huge!

    I know I'm too prejudiced to join up our local branch of AC because when I gave money to them in a local supermarket they were all over 60s and included a very Nationalist old auxillary who I recollect being horrible to me in the matty ward when I was having my kids -so that put me right off - and it is an age thing too because when you have something more systemic than visible then it's people in the same boat we look for not people who are doubled up with arthritis?

    Re the semantics - I think it's more important maybe than you realise DD. My sisters are both profoundly deaf from birth and the RNID has recently changed it's name to Action on Hearing Loss (AOHL) and I won't tell you what the deaf community call it now because it's too rude. Hearing loss is hard and obviously it's where the funding lies because it affects so many -but if you've never had any hearing to lose in the first place then it really sucks to have people describing your condition as merely "hearing loss" - that doesn't really begin to describe the isolation that most profoundly deaf people have to cope with in a hearing society like ours.

    I was listening earlier to my local radio station and a big cancer awareness campaign presently on with individuals talking about getting their diagnosis. I can't help thinking "why don't Arthritis Care get on there and talk about getting a diagnosis of RA or PA or AS?" Is it not just as terrifying to find you have one of these? I think so - but it's also far more lonely because there's so much support and info available if you find you have cancer compared to arthritis. Oh well soap box delivery over - I feel more strongly about this than I had expected to really - huge public awareness campaign about autoimmune arthers bring it on please AC!
    Mat x
    Ps how are you DD?
  • spacey
    spacey Member Posts: 126
    edited 30. Nov -1, 00:00
    I thnk the change in name would be beneficial to me in that its not my joints that are affected but the point at which tendons and ligaments meet the joints - the enthesis. To tell people what I have results in blank faces so I tend to just say arthritis however as people say my joints look ok, I dont limp and look too well!!!!
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Yes I relate to that Spacey - I only get visible redness and swelling occasionally and my wrists show nothing but they are terribly painful a lot of the time. My fingers look bruised and swollen but this only shows in a certain light - they don't look like the terrible images you see if you google RA - and my knuckles are always raised and red but as with yourself it's the tendons in my hands that are the main problem re pain. Take care and suggest that you just start telling people who ask that you have Rheumatoid Autoimmune Disease and see how others react. Mat x
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    well do not have much to add to this as have only got as far as inflimation arther so do not even know which beast i am fighting but do know how ill it makes me feel and that others just do not get it but then i did not till i had to learn about it val
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Hi Val - well I think all inflammatory arthritis's need greater public awareness not just RA. My rheumy said "for now we can call this sero-negative RA as a working name - but we will keep an open mind as things can change, and in a sense it's not the name that matters but what we do about it".

    The reality is that the name does matter a lot in so far as without it accessing support e.g NHS therapies, benefits. medicines and employment entitlements becomes much harder. In itself it doesn't matter to some I suppose - although I was relieved to be told that my rheumy was calling this RA for the time being at least. Do you find it hard to get support without being pigeon-holed I wonder? Mat
  • Colin1
    Colin1 Member Posts: 1,769
    edited 30. Nov -1, 00:00
    What would we call PA
    Colin
  • kathbee
    kathbee Member Posts: 934
    edited 30. Nov -1, 00:00
    Mat48 wrote:

    Hi Mat

    Interesting.
    First time I saw a rheumatologist and got cofirmed diagnosis of RA, I remember he told me that a better name for RA would be Rheumatoid Disease, thats 13 yrs ago.

    Mind you, if it did change to that peeps would say - oh my auntie so and so had rheumatism. :roll:

    Kath
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Yes I know what you mean about the auntie having rheumatism - even my mum used to say that and I never will now find out what she meant by it - was it RA perhaps - but she's dead and gone so I'll never know now. But it's the autoimmune part that's the bit we want to get across to people. And PA could easily become Psoriatic Autoimmune Disease too or PAD? TTx
  • suncatcher
    suncatcher Member Posts: 2,174
    edited 30. Nov -1, 00:00
    I think changing it would lead to more questioning from people. I like people to see me as me. I can understand why it should be changed as i feel it is not taken seriously enough.
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Yes that's exactly what I feel too Suncatcher. Mat x
  • Rallymad
    Rallymad Member Posts: 84
    edited 30. Nov -1, 00:00
    I think that would be a good idea as I too get funny looks when explaining that I have RA, even funnier looks when I say it is sero-negative!! I managed to get a diagnosis just after my 30th birthday so thats nearly ten years ago, and yes when I drive my car into a disabled space and put up my blue badge folk ogle. My boss did not even know that it was an auto immune disease and we work for NHS. Something that helps describe what we have is surely a better way to go??
    Arlene :D
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Yes I agree - it's hellish trying to explain it to many people isn't it? Such a relief when people look suitably upset and concerned and say "oh RA - that's awful - I'm sorry" but it tends to either be people who have a close friend or relative with it or people who are in the medical profession.

    Mind you even a community nurse I know said "oh no - you're far too young for that surely?" and I was 48! And the other night at a dinner party these two women both did the concerned "we know what RA is" thing when I explained why I couldn't chop up the pastry base on the desert - and then one went on to say "our friend with RA is getting much worse - she's even been put on a chemo drug now?". I nodded and said "yes I'm on that too" and she looked dumbfounded and asked me if I'd tried cutting out the deadly nightshade foods first?! Mat x
  • ironic
    ironic Member Posts: 2,361
    edited 30. Nov -1, 00:00
    I think maybe RAD might be a good idea, I was at my doctors when he had students in and when he mentioned RA they immediately looked at my hands. So it might help with the next generation of medics to better understand the condition and even take more of an interest in "Rheumatoid" as when I first went to my doctors for results they openly admitted that they knew very little about it.
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Interesting point Mat. My GP, who is pretty on the ball, refuses to call it Rheumatoid Arthritis, preferring the term "Rheumatoid Disease" so as to include all the non-joint manifestations. I have tried that term on a couple of people who have asked me what is wrong and found that it is easier then to explain and people seem to understand better.

    Tillyxxx
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    That's good to know - actually I think my GP just calls it "Rheumatoid" as well so think I will try doing that too from now onwards. On the RA site there's more talk about fatigue, blood problems, eye problems and even the attacks on organs as there is of the arthritis side so it makes sense really. Mat x
  • mimiofdc
    mimiofdc Member Posts: 24
    edited 30. Nov -1, 00:00
    I believe a name change could work wonders, even if only for those that have it and have to explain it.

    I have similar issues with communicating to people. I am not diagnosed with RA (those I was once) but ankylosing spondylitis primarily. I generally use the name first then once greeted with the blank stare, resort to throwing in "arthritis". Then I get the lay diagnosis to exercise, go gluten free, yoga or whatever. I am trying to use "autoimmune" more myself to avoid the frustrations that come along with it.
  • Airwave!
    Airwave! Member Posts: 2,424
    edited 30. Nov -1, 00:00
    Some points spring to mind to ponder:-

    1. Arthritis is an encompassing description for a large number of illnesses, if you divide each one into their component parts, you will also divide the charities and the effort of all their supporters, fundraisers and volunteers not to mention their staff, paid and unpaid.

    2. What would you call OA if arthritis is to be a non-word? Will this branch (or any of the other 250 odd types) of arther be supported by a smaller charity if RA/RAD hives off on its own and draws funds away?

    3. At the end of the day, arther is still the same disease and it will not be changed or cured by a name change, it may cause a cure to be further away by raising less funds because the effort is divided?
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    I take your point entirely Airwave - this isn't an uncontroversial topic I'm aware and the umbrella issue is a hugely important one I agree. But Ankylosing Spondulitis does not contain the word arthritis and nor does Lymes Disease or Lupus and all three contain strong arthritic elements and include forum members on this LWA site. The thing is that when we say "Arthritis" most people think of Osteoarthritis - which, admittedly unfairly, is associated with the older population primarily. I say unfairly because I know there are younger people diagnosed with OA too having read their posts on this site and that too needs addressing with more public information.

    But it is misleading with diseases such as RA and PA to give as much emphasis on the term arthritis as on Rheumatoid and Psoriatic because for many sufferers the systemic problems that attend these autoimmune diseases are ignored or short changed by employers, colleagues, friends and families. A name change wouldn't take away the arthritic element of these diseases but it might help us to better explain the autoimmune, systemic element to these diseases don't you think?

    When I was first at the GP's with my RA symptoms, less than a year ago, he examined my knee joints and explained that all of us will have Osteoarthritis to a degree as we age, wheras rheumatoid affected far less people and was more serious and potentially even life threatening. I knew my elderly neighbour had died from complications caused by one type of arthritis but could not remember which one had attacked her lungs and then her blood. Now of course I know.

    That's a big difference between what people thing of as arthritis (OA) and the reality for most sufferers of the rheumatoid diseases and a name change might help the general public in its understanding of why many people with these types of autoimmune diseases get so badly depressed, feel so isolated and have to quit work early or face extreme ignorance in the work place and when applyibg for benefits - because of the variability, unpredictability and invisibility of these diseases?

    Arthritis Care and Arthritis Research do brilliant jobs, as does NRAS - but a name change brought about through widespread consultation might help to make it so much easier for these diseases to get the attention they badly need and deserve don't you think? Mat x
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Airwave! wrote:
    Some points spring to mind to ponder:-

    1. Arthritis is an encompassing description for a large number of illnesses, if you divide each one into their component parts, you will also divide the charities and the effort of all their supporters, fundraisers and volunteers not to mention their staff, paid and unpaid.

    2. What would you call OA if arthritis is to be a non-word? Will this branch (or any of the other 250 odd types) of arther be supported by a smaller charity if RA/RAD hives off on its own and draws funds away?

    3. At the end of the day, arther is still the same disease and it will not be changed or cured by a name change, it may cause a cure to be further away by raising less funds because the effort is divided?

    In (cold) the light of morning I wanted to add that because all these diseases have arthritis as a major symptom then arthritis is the common denominator and a name change for each individual disease doesn't mean that arthritis should not be the overall umbrella that connects them.

    Why would arthritis become a non-word??? - Osteoarthritis is still the main arthritis and the others are all still arthritic so no one is suggesting that Arthritis Care changes it's title. But you are wrong to say "at the end of the day, arther is still the same disease" because it's not.
  • Airwave!
    Airwave! Member Posts: 2,424
    edited 30. Nov -1, 00:00
    I agree, there is a lot to talk about and a name change may be the best for RA sufferers. I would not want to divide the effort of the charities, support groups and all the thousands of people who support and raise funds.

    It seems that arthers are complaining of what others know about arthritis, education of the public may be as hard as herding cats and lead to division of efforts and income.

    My niece suffers from arthritis of the blood which is still grouped in with the rest, it certainly is a diverse disease.

    The giggling machine is back, must stop.

Who's Online

10
stickywicket
stickywicket
+9 Guests