Dear Helen, I WOULD LOVE TO SEE THE NAME OF THIS DISEASE CHANGED!
I detest the very look and sound of the word "RHEUMATOID" and in my experience the "ARTHRITIS"
part is misunderstood, utterly misleading,not to mention confusing to all who we tell it to!
I too, experienced for years, people telling me and my partner that "they had a touch of that" or their
parents had it for years!
My Mum had Arthritis of the hips for which she had two hip replacements and is now fine. She is 80 years
old and partly Bionic! But she does not have Rheumatoid Arthritis.
(People will suggest that we "rub deep heat into it"!)
I think that all the Specialists would have to be convinced about how much we want a name change
and that other countries would need to be in agreement.
Also, why is our disease not known about by people when there are so many sufferers?
This mystifies me!
How come as women we do not seem to be aware that we are more likely to develope Auto Immune
diseases?
There are more questions than answers about this disease and the lack of education of the
population in general about it.
I would back a petition to get the name changed.
Best wishes and good luck,
Fiona

Not being difficult at all jean... its something that ARC and Arthritis Care have been doing for even longer... I guess my point was that even with my condition being called stills disease, people still asked questions and whether you mention the word rheumatoid or arthritis, the perception is that its something you get in old age... Regardless of the name, people are always curious but it will always come back to what they have known in the past.

There hasn't been what I would call a huge drive on changing perceptions... up until a few years back, charities were still using stock photos of older people. Arthritis Care published a booklet called CHAT - Children Have Arthritis Too but this was only really made available to parents of children with arthritis. I think if it had been made available to schools, raising awareness would have been easier. I've also noticed in the past that profiles are only really raised through radio/press when it is World Arthritis Day

I think more focus needs to be on educating from a younger age and through a wider range of media.... after all... Rome wasn't built in a day

hope everone had a happy xmas wasnt on the forum myself as i had a lot of pain this last few weeks
i agree with changeing the name when yuo mention arthritis people say back to you you are to young to have that
my g.p sometimes just puts arthritis on my sick cert i think if you dropped the arthritis to rheumatoid pain it might help

Hmm good point Julie.

I also wonder has it been looked into already and one of NRAS's aims is to educate the public adn professionals on RA. Wonder what work through research, and analysis done on both areas of improving peoples perception of RA and changing the name.

How about if we called ir just RA the why MS is called MS... which i supposed would be pronounced as Ray and then separating it from artheritis explaining that it is as an systemic immune disorder (SID). Whichi is far more accurate that simply artheritis.


That way NRAS could build on the work already done its just packaging it slightly differently.

I think RA is a well-kept secret - no-one seems to know about it until they have it. I agree that the profile and explanation of RA could be raised, but not sure how. A petition would be a good idea, but will we be preaching to the converted? I think if we could get a few celebrities with RA to chip in, that might help

I remember not long after being dx, I went into Debenhams china dept, I asked the assistant if she could lift a plate for me, as I had RA. She said "Oh I think I might have that in my arm See what we're up against!

Lyn

I agree Jenny, NRAS are doing a good job in raising the profile of RA.
We have heard more about it in the last few years than ever before .
I know we get comments like "Oh yes I had that and got over it" but recently I have had a few comments as to how someone has heard on the news just how serious a disease it is so they are beginning to raise awareness of it.
It won't happen overnight , it takes time and I think NRAS are well on the way to making our voices heard that RA is not "just a bit of arthritis".

Doreen xx

Hi Helen, i would love to see RA changed to anything but without the " arthritis" being mentioned. Sometimes i just tell people i have an autoimmune disease.
You are so right Doreen, its not just a bit of "arthritis".

Jenny
xxxx

I always call it "Rheumatoid Disease" and so does my Rheumatologist.

Rather than using time and energy campaigning for a change of name, why not attempt to educate or re-educate as many people as possible about the disease; the fact it affects all aspects of a person's life etc? With NRAS raising the profile of the disease, shouldn't we all be doing the same and talking about it? At the end of the day, it's the effects of the disease that we want non-RA'ers to understand, the name doesn't really matter.

My consultant also calls it Rheumatoid Disease x

I talk of it being auto immune explain what that means,who can get it and that it doesnt just attack joints but systemic to and explain what that means.

seems to work well some ask more others say ive learnt something new today.
melly