I have followed many of the posts on the RA site, and listened to the terrific variation of this illness. And following a conversation with my rheumatologist I now agree that the condition RA should be renamed Rheumatoid Disease. When you say RA to someone it's not taken seriously as people will comment " yes I have it in my knee ". It is also still seen as a condition afflicting the elderly. Like many of you mine bares no relation to the general perception. When I started this journey I would never have imagined the complications of RA. The cells, the antibodies, the deviousness of this disease. Mine has impacted everything from my joints, my skin, my lungs, my kidneys, in fact my life. The NRAS do a fantastic job fighting our corner and getting people to listen. I am now going to look at ways to get government etc to understand our disease and our fear. As fear is a major part of this disease, the fear of the unknown. So let's help in every way we can.
Shazbat
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Hi, I absolutely agree with you...when you tell people you have R/A they think it's arthritis and have no idea how it affects all our body...I'm with you on this one...and will help if I can..maryx
I agree too. I had a horrible experience with trying to get travel insurance for a holiday to New York we are planning for. The woman from the insurance company my travel agent works with told me that RA is listed as arthritis and as I told her that I have an autoimmune disease she couldn't give me travel insurance because "rheumatoid arthritis is only arthritis and is not listed as an autoimmune disease"! I tried to explain that it is but she flatly refused to accept this saying that Lupus, MS and AIDS were on her list but not RA. And of course she was right and I, a mere sufferer, was wrong!
My GP always calls it "your rheumatoid" and as my RA is very much bordering other of the rheumatic diseases I don't call it RA anymore at all.
In the States I believe it is now known as RD because of RA/ RD Warrior's successful lobbying.
Warm regards,
Twitchy
in reply to
When I contacted my bank's insurance company for travel insurance and I explained that I had PsA, yes they had it listed under Arthritis, I then explained that I was on Anti-tnf medication and another immune tablet to combat this disease, she said that I would still be covered as their listing said Arthritis. I said so if I had to use the medical team on the boat or shore you would cover it she said yes, I then I asked for her name which she gave and I placed this all with my documents along with the date so that if I claimed I had the relevant information. It is not our fault if they have it listed incorrectly, equally by my telling them the full facts before hand I felt that I had covered myself.
I do hope that you were able to get yourself covered for your trip.
I was thanks Georje but, like Shazbat, my disease is ever changing and I couldn't lie so when she asked if I was having ongoing treatment for my "arthritis" I said I was and my condition may soon come under a different heading. That's when she got even more clipped and unpleasant with me. I felt I had to tell her because my eyes and skin and nerves are all affected at present and if I need treatment for any of these in NY or on the flight then I need to know I'm covered financially if I claim. So if RA is listed as arthritis only I would presumably be up the Swanney without a paddle?!
I saw a question on here about travel insurance for New York and went for a company recommended on there and it was great - the man had RA listed as an AI disease and when I explained things might change with me he said that would be fine as long as I let them know. He asked where I had found the company and I said NRAS HU forum!
Hi twitchytoes it's great to see the replies and that people are thinking along the same lines. I have just contacted an insurance company and the lady was incredibly clipped with me. She kept reiterating that if I didn't tell the truth it would be void. I explained she had said that at the beginning of the call she didn't have to constantly repeat the statement. We go to our house in Bulgaria for 4 1/2 months nearly choked she just quoted £283. Could you give me the name of the company you went to please.
Staysure travel insurance - we only went for single trip policy though as don't go abroad often enough to justify annual cover. healthunlocked.com/nras/que...
Having RA does make it massively more expensive though but at least the man was pleasant and helpful! If you put New York in the HU box the thread should come up as there were other companies suggested. X
My father-in-law has had cause to claim from Staysure & they were extremely unhelpful & difficult to deal with. Not top of our list of travel insurers. Long story but if anyone wishes to know I would be more than happy to explain why.
Oh dear I wish I'd known that before taking out travel insurance. At least it is only a single trip and we will just hope my RD behaves. Useful for others to know though.
I did notice a thread a couple of weeks ago about travel insurance & considered replying then but didn't want to alarm which is why I didn't share. Don't stress, stay positive & enjoy your hols.
Totally agree with you Shazbat ...I really think a change in name would make people more aware , the word 'arthritis' is so misleading ..well done you and Goodluck Claire x
Thank you all. I have the summer in Bulgaria to start writing to people. I will also ask NRAS if we can be supporting anything in writing that they are doing.
I personally couldn't agree more and this has been an ongoing discussion for many, many years. Rheumatoid Arthritis is a globally accepted name for the condition so it isn't really down to the government or NHS or NRAS to change the name unfortunately. More and more often clinicians are actually referring to RA as a "syndrome" rather than a disease even as it does present in so many different ways in different people. What I would encourage each and everyone of you to do is do your bit to raise awareness of the condition by you, yourselves referrring to it as Rheumatoid Disease or Syndrome. Nothing stopping you when speaking to people you meet, work colleagues, friends and family to use these terms and in small ways we can all begin to change the public perception of this condition. From little acorns and all that, do mighty oaks grow. So start today to drop the "A" ...that's quite a nice slogan!
Have a great weekend one and all and NRAS staff will be flagging the flag for you all at the British Society Rheumatology conference next week in Liverpool and will at every opportunity be YOUR voice on this and many other matters
i stopped referring to it as arthritis a long time ago. the usual remarks "yes i have that in my knee" crack me up but i have started to explain it now to some people who i think would be responsive. most admit they didn't think there was any difference and are glad to have it explained.
just drop the arthritis part and gradually the message will get through. my consultant refers to it as 'my rheumatiod disease'.....if its good enough for him etc, etc,
Hi Clare, I've just read your answer to Shazbat regarding RA verses RD. I am fairly new to this 'Syndrome' and can guarantee that in future, when talking to anybody about it I do not have RA, I have RS. I really think that it explains this condition far more than RA because anybody who hears the word Arthritis automatically thinks of bones, getting old, etc. etc. whereas this condition is totally different. Many thanks Clare for all you and NRAS do.
Personally I think "disease" is a better term for describing RA/RD than the terms "syndrome" or "condition". It is darker term but to me it reflects the seriousness and the related symptoms better. For instance Aspergers, a type of Autism, is described as a syndrome because it is not a disease, does not progress or remit or make you sick but is congenital like deafness or blindness or any other disability.
Rheumatic diseases are described as such because they follow certain paths that progress and change and are tracked and researched by disease specialists, epidemiologists.
Equally I think it is very important to flag up the autoimmune aspect of RD because for me it belongs alongside other rheumatic diseases such as Lupus, Scleroderma, Vasculitis and other autoimmune diseases such as MS, as does PsA. I feel these rarer but equally serious diseases that sometimes cross over with RD/RA and PsA need to stick together more. I would keep the word arthritis out because arthritis to me is OA and OA is a serious disease too, but one that everyone will suffer to a greater or lesser extent and it isn't of the systemic autoimmune family.
Thank you for your response Clare it's good to hear we are all going the same way, but I'm with Twitchytoes I believe it is a disease as does my Rheumatologist. It progresses as my friend said unlike a condition, and it is more likely to be taken seriously described as a disease. I know when I explain to anyone about RA they are confused, a number have actually said you mean Lupus. I also get frustrated when people speak with scorn and say " well I have that and I'm not registered disabled ". But something we have not mentioned are the drugs. These are serious drugs with can have some substantial side effects. I feel people with our disease are constant Guinea pigs as this illness morfs in many different ways. So I will tell people what I have but I think I will refer to it as a rheumatoid disease.
I have psa but say I have an inflammatory disease or rheumatoid disease for the reasons you say . I have even had a "my dog has arthritis" reply .. its so not just arthritis. I nevrr use psoriatic unless im talking to someone who understand s xx
amen to that ! agree wholeheartedly , sick of people thinking I have a bit of a twinge , lets give this a name that reflects the fact that it effects the whole body and is a serious condition.
I've had problems with travel insurance too. I have RA but when people ask what's up with me I say I have rheumatoid auto immune disease. I try not to mention "arthritis'.
What a marvellous lady you are!!! It is a great pity that people are not as aware of the implications of RA as they are with other illnesses/diseases. People should be made more aware of the implications of this horrible disease. As you say if we mention that we have RA they seem to think oh well, you've got a few aches and pains, so what?. If they suffered from this monster they would understand what our so called aches and pains are really like. Take care and good luck.
I have to admit Paulineg, that when i was first diagnosed 28 years ago, I thought "oh, just a few aches and pains, I can live with that" I now know differently. Within 6 weeks of diagnosis I couldn't get upstairs except by dragging myself up by my elbows (couldn't do that now!) and sitting on my bottom to shuffle down again. I also wish there was a better name than rheumatoid as it is too like rheumatics. Autoimmune Disease works for me as I also have Sjogren's Syndrome.
Thank-you. What are your thoughts on Shazbat's post re name change from RA to RD?
Hi Shazbat, I did reply to your post yesterday but felt I had to come back to you again today. I kept waking up last night thinking of you trying to get 'the powers that be' to listen and start realising just what obstacles RA sufferers have to put up with. I am 70 (only just) and I can see the look on peoples faces when I tell them that I have RA. They automatically think, well she's getting on a bit, she should expect a few aches and pains. If that was all there was to it fine but as we all know, it is not just a few aches and pains. Now I must get to the point of this reply and stop waffling. I would really like to help with the fight to get the title of RA changed to RD but unfortunately do not know where or how to start. If you do find out more or know how I can help in any way at all would you please send another post through this site as I really do want to do something useful. Many thanks Shazbat xx
Hello to everyone and the fantastic replies. First we need to get people to understand and get authorities to listen. Many of these things are being persued by the NRAS so we need to get on as many NRAS committees as possible. But I understand that can be difficult for some people. But what we can all do is begin with our health authorities, until they take us seriously no one will. We had a fantastic helpline for contact with our rheumy nurses diluted by some jobs worth who thought he knew better. With anonymous nurses who did not know us plus a possible 7 day wait for a return call. Not only have we reversed these changes by complaining, but they are better than the previous system. We also need to explain on Social media sites what RA and PA are. I understand what Clare is saying from the NRAS, however what I do not understand is why we cannot have our disease reclassified. Manic depressives are now referred to by the medical profession as Bi-Polar. So why can we not change the designation from Arthritis to Disease. It is a disease not only do I take the drugs to control this disease, I then take multiple other drugs to deal with the side effects. So let's start with the title. And I would ask that the NRAS start with a questionnaire to all members asking how we wish to be designated. If you agree with this can you please agree with this post, as I know the NRAS read these posts. Then perhaps they can go to next years conference with a mandate from us.
Hi Shazbat, I agree to everything you have said 100% and I will certainly tell people that I have RD in future plus I will be having a word with my clinical nurse when I see her in a couple of weeks and see if she can come up with any suggestions. She is very good and might be able to help in some way. I will be watching these posts with interest to see if there is any real constructive help I can give. Thanks for all you are doing.
I may be wrong, but don't they already call it Rheumatoid Disease in the US?
hi hope your as well as can be you have just given me some inspiration to bring rd to the attention of this gvermnet thik i will right to david cameron ty
I have written to the leader of the Labour Party. Firstly because I'm a member of the Labour Party. Plus until last year a senior trade union officer. I loved my career but the Rehumatoid disease took over. Mine has also taken to attacking my lungs too. I was reading posts today from people just diagnosed and listening to the fear. You want to help but you also want to say the fear never really goes away. Because this disease is different for everyone. Our bodies are turning against us, the first step was the new centre that has opened in Scotland. Hopefully they will be able to predict who will get the disease and prevent as much as possible. We must get people to understand that RA is not a sore knee or a dodgy shoulder. It can be a life threatening condition so should be recognised correctly so people understand, especially employers and GPs. We must write to as many people as possible. To be heard.
I agree with everyone that RA should be re-named and would do anything to support this motion. Personally, I don't think Syndrome is nearly as descriptive as Disease. As I understand it, in the field of medical genetics, the term "syndrome" is traditionally only used when there is a known underlying genetic cause. I know that the disease is different for everyone, but even if controlled by drugs, it is a potentially progressive disease. Syndrome somehow implies that it isn't; well, it does to me. Rheumatoid Autoimmune Disease would be better still, since the auto-immunity is such a key element.
Had to ring in work sick today, my line manager is off so had to speak to her equivalent who asked me..."are you off with your arthritis" no I replied I'm off with my auto immune condition!!! Felt too unwell to care but it's makes me so cross that us sufferers face so much prejudice!
I know this thread is 2 years old, but I totally agree!!!
Hi, I've only recently been diagnosed and joined here, so only just read this now 5 year old thread. I totally agree. Has this got anywhere in the last 5 years?
Well the treatment is substantially better than it ever has been, however the experience around the country is still patchy. I'm fortunate my hospital was one of the first with the Rheumatoid help line were you can contact a Rheumatoid nurse. However the connection between my GP and the rheumatologist is virtually nonexistent. I still have to have monthly blood tests at hospital because my GP surgery will no pay. Etc however the outlook for RD patients is a lot better. One rule, it's your body , you have a say in your treatment. Make them explain everything and all of your options. The treatment sounds incredibly frightening but trust me it's far better than the the consequences of this disease. Good luck. And most places still call it RA lol.
Thank you! So far I have been really impressed with my GP and the Rheumatology Dept. (Nuffield Orthopaedic centre in Oxford) and yes so far it's still being referred to as RA by them! RD is a much better term for it. Cheers 😊
I agree that disease is better than arthritis, however a broader title of Inflammatory Disease would encapsulate most of the RA type disease and also include various related tummy issues such as IBD
Well said. Let's get the name changed .if any one says to me Oh I have arthritis in my knee etc ,I reply I wish I only had that ! It's taken far to lightly . I actually had someone says to me that she knew someone who had cured themselves of course I told her what rubbish and said she never had it in the first place. Makes one so mad .Let us know how to get this awful disease over to the people.because on less you are talking to a medical person no one knows thank you Pat Williams.
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