I did not know

I did not realise that rd effected you as it dose your eyes and ears mental health as well as your joints how can people just say is that all you have this condition is a future nightmare .feeling low

[Philip]

Not an easy disease to live with but we are all here to cheer each other up when we can and to comfort each other when times are really difficult. Which is better than most other sites

Philip

[allanah]

Because they don't understand it babe! I didn't and all my family have it, but I didn't really understandvunyil I got it! That's why NRAS awareness week is do important font you think ? X

[Hidden]

Hi lucindajune,

So sorry to hear you are feeling low. As Philip and allanah say in their posts, it is not an easy condition to live with. RA is a variable condition and people can get different symptoms at different times. As well as the obvious joint involvement we do know that some people with RA may develop other problems with other organs such as their lungs, heart or eyes. However, it is really, really important to remember that this will not be the case for everyone who has RA.

It may be worth having a word with your GP or rheumatology team just to let them know you are feeling low. I do hope you soon feel a bit better

Take care

Sally

NRAS (Helpline)

[nomoreheels]

People can be so thoughtless at times & hope your mood is able to shift itself soon. Is there anything you could concentrate on away from RD? As allanah says hopefully this week will highlight the problems we all have. I have to say though I'm disappointed I've not seen any TV coverage yet. I was hoping it would be on most newsy type or daytime programmes most of the week & nothing on Breakfast or This Morning when I dipped in this morning or yesterday unless I missed it. We don't get a daily paper only a Saturday one so don't know if they're anything been reported in the press.

Anyone else seen anything?

[Jora]

I haven't seen any media coverage, except for a brief reference from Kathleen Turner.

( there's been a lot on Crohn's Disease). It's a pity if this opportunity isn't optimised. I did put up a display at my open studio last week; alongside my paintings, I sold cards in aid of NRAS. But that was only 250 people! (and £60) I agree with the 'arthritis' label, but is 'rheumatoid' much better? Isn't that seen as Rheumatism, equally trivialising the disease?

[nomoreheels in reply to Jora]

I saw on Breakfast they were reporting on Chron's too. Where is the NRAS coverage?

More of us are increasingly using RD instead of RA, hopefully covering all. I don't particularly like arthritis or rheumatism used as singular words either. As you say it trivialises it & is "deformed hands" & no more in most peoples eyes.

[IainM]

I haven't seen anything on the media at all for NRAS week, there are a few things on FaceBook and Twitter but nothing much else..definately a missed opportunity to get this out there..I have put a few things on my FaceBook with the #lookdeeper tag but no-one seems to know what RA/RD is they see the Arthritis and think oh my gran has that or oh I have that in my ankle from an old football injury..Crohns is getting some really good exposure just now due to the celebrities who have it and quite rightly so as it's horrible,..I just wish RA/RD was getting the same to raise public profile to the masses...sometimes I think the

media and public just seem to shrug this disease off as if it's not important or damaging enough

[Jora]

What we/they need is a footballer who had to retire because of RD/RA . I wouldn't wish this on anyone, but if there is such a man (or woman), that would be a good link right now. And I wish Kathleen Turner could be persuaded to say more. Who knows, maybe NRAS have this in hand.

[nomoreheels in reply to Jora]

There are some who suffer related problems out there. We don't hear them talking about their conditions much but David Beckham has a mild form of arthritis in his toes, Roy Keane has "possible" osteoarthritis in his hip, Harry Kewell has septic arthritis & Ian Mellor (ex pro & Neil's father) has had his hips resurfaced because of osteoarthritis. If there are any who specifically have RD they're hiding in the shadows.

[Jora]

I'm impressed by your knowledge, Nomoreheels. If they are hiding in the shadows, I suppose one can't blame people for not outing themselves. It probably doesn't occur to them how helpful they could be.

[nomoreheels in reply to Jora]

Oh but they would, eh?. Not everyone likes Beckham but there's no doubting he's high profile!!! Maybe he can't Bend it like Beckham so much anymore lol!

[Jora]

Haha! Nomoreheels.

I'm not especially fond of DB myself, but could warm to him if he espoused the cause. But the trouble there would be that people would say "oh, that's the condition that affects your toes, isn't it?"

You know all these silly Quizzes such as "Which Hollywood Star are you?", well there is also a range about diseases

Top-Rated Quizzes:

How Much Do You Know About Alzheimer’s Disease?

How Well Do You Understand Cholesterol?

If we could get RA/RD listed, that would heighten awareness. But perhaps best to get the name changed first!

I still see Kathleen Turner as the best high profile ambassador that I can think of . She lost ten years of her life to the disease and had an annual joint replacement. I think she is 'in remission' now, but no doubt that it is due to industrial-strength medication.

[nomoreheels in reply to Jora]

Easy on the eye but none too keen on the tattoos! You have a point re the toes & did come across something about quizzes & RD but not sure where now at it was a few months ago & my arms aren't long enough to reach into it that far back!

Still not seen anything about awareness week, so disappointing.

[Jora]

I'm with you about the tattoos! Yes, very disappointing about Awareness Week. I've googled it and nearly all the results are NRAS - i.e.: preaching to the converted. I am sure that the staff at NRAS are working hard, and I just hope that there will be a big splash within the next four days.

[Jora]

Following on from our discussion about RA Awareness Week, which we seemed to feel was not very effective…

When I sent a donation to NRAS from sale of cards of my paintings, I gently mentioned my disappointment that I hadn't seen or heard anything. I thought you might like to read this response: "our media success this year increased by 280%, which included coverage in 7 national papers, 13 BBC local radio station, a forthcoming feature on the Jeremy Vine show with a listenership of 15million as well as 50 other features across UK". Jeremy's sister is a friend of mine (a fellow artist) so I will ask her to make sure that it's kept on the agenda. As for the other coverage, I obviously don't read the 'right' papers! Jo

[marcus6]

Hi lucindajune,

I have tinnitus in my left ear ( ringing in the ear!) and decreased hearing in both, but the right one is not as bad as the left, june 2012 i had grommets put in both ears, but they have now come out, and over the past 12 months my hearing has gone down hill, and about 3 months ago that's when tinnitus started in my left ear, i have appt for ENT in October to have hearing aid fitted, i also had to go and pick my glasses up 4 weeks ago as i started to find it hard to focus when watching TV or using PC + i was getting bad head aches, and for about 2 week now! i have started to wake up with puffy eyes..........when does it all stop, and i think this is what leads to mental health state.....if its not 1 thing its something else, it just seems to be never ending,

Thank god for this site!

[Hidden in reply to marcus6]

that makes me wonder if tinnitus is the start of rd I have gone through just the same has you started 4 years ago with pulsating tinnitus and hissing in my left ear have lost 60 percept hearing now the eyes are starting up hard to focus some days, this is a miss understood condition that people just shrug off as there nothing wrong we all get that from time to time you are getting older it scares me to thing of what next