RA awareness day coming up!: rheum4us.org/press-release... - NRAS

NRAS
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RA awareness day coming up!

rheum4us.org/press-release-...

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sounds good x

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Yes I just thought it might be a useful thing to send around to friends and family for some of those on here who are met with the "pull yourself together it's just a bit of arthritis!" stuff. TTx

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I will watch out for it, thanks

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Sue I don't think there's much to watch out for it's not a tv programme! if you click on the link I've provided you can see that it's just a piece of writing highlighting RA to those who have no idea how it differs to OA and how it can affect us systemically plus organs etc. TTx

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Might give the link to the neighbour I was complaining about on here recently.

One of the things she said while stubbornly refusing to 'get it' was 'But you don't have ordinary Rheumatoid Arthritis, do you?'. I said that I did indeed have 'ordinary' RA and she just sat there, staring at me sceptically. I asked if she knew anyone else with RA & she said yes, one elderly woman. When I asked what was happening with that lady she said 'Oh, her hands are really gnarled and nobbly, much worse than yours. And she can't walk properly and had a knee replacement last year ... but that was probably just wear & tear ....'

Obviously those lucky people with plain old 'ordinary' RA don't have much to complain about ..... just some deformities, disability, painful joint replacement operations ....

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She probably meant ordinary OA then. And I would have been tempted to reply "well only in the same way as you had ordinary cancer?". I mean I see how its worse for women psychologically to have a breast removed and replaced with a piece of silicon than to have a knee or hip replaced ... just. But I don't really see how it's so hard to grasp that arthritis is appalling in all it's forms when it's severe?

I've just had a wee spat with a radio journalist on our local station for doing a sketch about horsemeat and making arthritis the but of the joke. I sent him this link too and now confess I did have sense of humour failure about this as I get SO sick of arthritis being a subject to joke about when they would never even dream of making jokes out of cancer? I know this is becoming a particular bugbear of mine but he emailed me back saying both his grandparents suffered with RA and he would never make jokes at the expense of RA sufferers or anyone with arthriits as that would be crass and horrible because he knows how much pain this disease causes.

He explained that the joke was at the expense of Tescos and horsemeat burgers and that was fine surely? Implication being "get off your high horse and stop being a humourless cow!". I hate the idea of appearing soap boxy but at the same time this sketch bugged me all week somehow? But I appologised for being a tad OT anyway and hope something has got through to him at least!

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My neighbour is a pretty sharp, very accurate type of person (usually!) so I should think that the elderly lady does have RA. I'd been telling neighbour about mtx, damage to my joints etc. whereas I suspect the other woman doesn't complain or elaborate, hence neighbour's assumption that my RA must be a nastier beast & that RA generally is nothing much.

You did the right thing, I think - anything can be funny but equally anyone with the condition being laughed at is entitled to have a total sense of humour failure & to upbraid the comedian just in case they are completely lacking in awareness. Sounds like this geezer was making excuses for himself.

Luce x

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Thanks Luce. I've just PMd you with the spat in question for your judgement on whether my sense of humour is starting to absent itself entirely. This worries me almost more than whether RA has or hasn't absented itself now!

I think your neighbour sounds a bit if a miserable bu**er if she can't just take you at your word that what you have is potentially pretty serious or they wouldn't prescribe hard core meds. I hate it when people pour scorn on me for taking these drugs and suggest alternatives. I would ask whether they suggest homespun remedies for cancer too but actually my friend who's husband died of stomach cancer at the age of 42 told me that people actually did this to him?!

And re people making too big a song and dance of RA - I think the fact that all of us come on here and need to talk about pain and drugs and other fears or crap feelings is testament to how lonely these arthritic diseases can be. Our local radio station is often doing weeks dedicated to falls (National Fall Awareness week) and Diabetes, MS and Crohns. So if the only way that arthritis can feature on the is as a joke its a bit of a sad day I feel? TTx

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This is great!!!

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I think so too! NRAS is wonderful of course but there's something about Kelly the RA Warrior that really sticks it to the world isn't there? Anyway if you get her e-magazine the Spear you will see that her campaigning took off in the States as a result of what NRAS was doing in the UK. I sent the link to Woman's Hour and suggested that they do a feature on RA since it affects two thirds women. I think that the only way to go for me is "off with her head!"?! X

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Please all read thie link, in USA they have a SIX week window from the patient first saying "what the hell is happening to me" and starting some sort of treatment!!!!!!!!!!!!!!!!

Please can NRAS put this info on their website?????????

Sorry about exclamation marks and question marks but extremely fed up and aching this morning.

J

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I think a 6 (or is it 8?) week window is recommended by the powers that be in this country too. Makes my blood boil too because consultation waiting lists usually blow it out of the water plus GPs aren't necessarily that alert to the telltale symptoms of inflammatory arthritis in the first place. I'm one of the many who experienced serious joint damage before NHS intervened properly. I think it's good when people post with 'Is It RA ...?' type questions & we all pile in telling them to get to GP ASAP & to press for a Rheumy appt. within weeks, not months.

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I know I think sometimes that we should put RA on our CVs because getting a diagnosis and ploughing our own way through the various treatments etc is such an uphill struggle for so many of us. We have to become experts and warriors and advise GPs and educate so we should be able to boast of this somehow?

It took me three months for first appointment from the point of seeing a GP and this was within the 12 week guidelines. My GP told my husband that the early diagnosis thing was a bit exaggerated and damage rarely occurs that quickly but he had referred me himself as soon as he got my blood test results and put me on Sulfasalazine because he feared I'd have to wait for too long? Then I had to wait a further 4 months because my RA was being masked by a steroid injection still so it was about 9 months in all. And I think this was still seen as an early diagnosis and early treatment - so heaven knows what others on here who are left stranded in limbo land for much longer are seen as or how this can be justified.

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Wouldn't it be great if we just put that link at the bottom of every email we send???

That is, to anyone and everyone???

I'm so really fed up this a.m. A friend just sent me an email saying how great everything was when we were young compared to the kids today!

I couldn't help myself : replied yeah and many of us have crap diseases now!

One friend has asthma, another cancer, another serious head pains. I'm ready to be put down on my 65th birthday.......and that's in June......

X j

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Sorry you feel this way Jan - I can understand it very well. But on the other hand some kids have this same disease too, even when you were playing as a child there were kids your age with it, and they have to live with it for very much longer than we do. I find that quite a thought when I'm shoving MTX into my belly or struggling to get out of bed in the mornings for ache and stiffness. I don't think it's great for our friendships either if we constantly push our RA at them and that's what makes this site so good because we have each other to moan to.

Hope this doesn't sound unsympathetic because I'm the same way with my friends - especially on MTX day when I usually feel on a very short fuse. x

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Thanks Tilda I have shared it on Facebook. I think it would be good to totally drop the "arthritis" out of the name as it causes a lot of confusion for us all. i think Rheumatoid disease or Auto immune rheumatoid is much more explanatory for "daft" neighbours. !! lol xx

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I agree with you Allanah that the word arthriitis is misleading. However I also don't think arthritis should be the butt of anyone's jokes because it is horribly painful for most who suffer it and it seems so wrong that people deride sufferers as if they were hypochondriacs who can switch it on and off with a copper bracelet. I'm getting seriously sick of the way arthritis is perceived and mocked by those who don't have it - whether it's Osteo, OA, PsA, AS, RA or Lupus. Pain is pain and as a global arthritic force we should be powerful enough to be reckoned with!

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PS the radio station chap emailed me this morning to say that maybe it was time they ran a feature on RA on our local station and could I give him the contact details for who to speak to from the NHS. Ha ha if I knew that I'd have spoken to them myself!!! (didn't say that of course!). Tilda x

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great to see RA re-named Rheumatoid Disease in USA. I think we should campaign for the change over here! what do you think?

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I'm in two minds. If people say they have Ankylosing Spondilitis it doesn't necessarily mean much to people who haven't heard of it and yet it's a form of inflammatory arthritis which doesn't include the A word. I think people just need educating much more about all the different forms arthritis myself. I did ask for people's views on this when RA Warrior first made the move for the name change in the US having read all her threads. I asked on Arthritis Care, where many of the living with arthriits forum users have inflammatory arthritis and I have to say that people were very divided.

The overall consensus was that it was a good idea (younger ones mostly) but some of the older members felt that it would disempower the other types of arthritis if everyone went their own seperate ways too much. People with PsA in particular got quite impassioned about it and farely steamed up at the thought of this more common sister disease going it's own way. I suppose that's what we should expect from an umbrella organisation for the various forms of arthriits but I really wonder what NRAS people think about this idea?

I think I'd want to be led by NRAS about how it might affect areas such as research, funding and education to have a name change over here because they do so much for RA sufferers in the UK and across the world. Tilda

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Hi all

This is a topic that crops up quite frequently, and there was quite a long discussion on HU last year about changing the name of RA - there were some interesting suggestions!: nras.healthunlocked.com/blo...

NRAS are also planning an 'RA Awareness Week' this year which will be taking place on 24th - 30th of June. There will be more details about this and ways to get involved on the NRAS website (www.nras.org.uk) closer to the time. The Rheumatoid Patient Foundation awareness day in Feb sounds great though!

Kind regards

Saraah Kate

NRAS

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Hi Sarah Kate, thanks for the link I recall that discussion. It would be interesting to know what you NRAS staff think about a name change? How do you feel it might work or impact on the funding and the efforts to educate about the rheumatoid diseases? If you all think it's a good idea then how might it come about? Should it start with the medical profession do you think? Tilda

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