Hi Helen

I agree that RA conjurys up images of slightly achy joints to people. Artheritis and Rheumatisim to the lay person is interchangeable. I describe my illness as an immune or systemic disorder/problem. Are there any popular names? Also I read somewhere might have been on teh forum that MS effects less people but its better known and understood than RA. I wonder what the MS organisation did - might be worth finding out what they or similar chronic illness charities did.

Hi,

I agree with you. People just think that we have a few aches and pains and usually tell you that they have similar. It would be good to have a name that describes the pain etc we have to go through.

Jayne

I have just been diagnosed in the last 3 weeks. my consultant kept saying that i had inflammation, rheumatoid, rheumatoid inflammation and wear and tears. But he never referred to my pains as Rheumatoid Arthritis. I asked him if the wear and tears were due to osteaoarthritis? It is only then, that he said no, it is rheumatoid athritis!! Then, i realised that i could be in trouble !! About changing the name, i agree. In those little weeks, everyone i have talked to have not understood. They all think that i have a few aches and pains and don't know the difference between osteoarthritis and Rheumatoid Arthritis. The major problem is at work, as this confusion prevents colleagues and managers to give the help and the empathy that would help me cope better at work. I don't mean by that pitty but just a bit of space on bad days !!

I agree with Doreen, my consultant calls this condition Rheumatoid Disease too. That's what I say to people when they ask what is wrong with me. People seem to think we just have a few aches and pains but this is a serious immune sytem disease.

Best wishes
Rebecca

I've had juvenile rheumatoid arthritis for 32yrs and over the years it has had many names.... When I was first diagnosed (just before my 3rd birthday) it was called JCA (juvenile chronic arthritis) or stills disease... In the USA it was referred to as JRA (juvenile rheumatoid arthritis) but then in approx 2005 it was changed worldwide to JIA (juvenile idiopathic arthritis) because whereas arthritis means inflammation of the joints, in juvenile arthritis it can affect the eyes and internal organs...

Quite confusing already isn't it??

Personally I would say keep the name rheumatoid arthritis..... yes it is a disease but just as when you tell people you have arthritis they seem surprised because you're not 80yrs old.... when you tell people its a disease, they seem to step away as if its contagious...

If I tell someone I have stills disease or JRA, they will still ask the question... whats that? If I then tell them its a form of rheumatoid arthritis, I will still get that look.....



I don't think a name change is going to make that stop....

Many years ago if you heard the word cancer..... you'd think terminal but because of charities like Cancer Research UK raising their profile and their supporters raising awareness, you no longer think that... you see people of all ages talking about how cancer has affected them, and how survival rates are forever increasing...

So rather than change the name.... why don't we change peoples perception, raise awareness that arthritis isn't just for the elderly...


ETA - in fact... I have a couple of ideas.... but will need your help......

Think of a scenario when you've had to tell someone you have rheumatoid arthritis and the reaction you got.... don't need long stories just a few sentences....

Like Helly I have had RA since childhood. When I was very first dx it was known as 'Stills disease' but then became known as JRA (although we didn't live in America!).

I would LOVE the name to be changed but as Doreen says, most rheumies now refer to it as rheumatoid disease anyway. I would like it to be changed to this as it retians the rheumatoid in the name but omits the arthritis part, and considering it is NOT arthritis, this makes sense!

There have been suggestions of name change so you would need to check with NRAS as I have some feeling that there was a petition at some stage....

Love,
Amanda

You mean like a 'PS' to technophobes?! LOLOL

I think that changing the name is an excellent idea, but I also think that it could take a long, long time. Still, all we can do is try, and if enough of us sign our names then someone, somewhere, might just sit up and take notice.

Anthea x

I vote we do both!

LOL

Having grown up with this disease, I think the name is very important, as this is what people hear first, making their own perceptions and opinions.....

NRAS are incredibly important to support too as they are our public voice.

Amanda

Yes, a name change would help people to realise its not just like grannies bad back etc. We should obviously continue to raise awareness of the disease, and all it entails, this is a very long haul too!
The reaction I get is what is the difference? when told I have RA and its different to OA. After explanation they look a bnit surprised, but still think its just something that will go away in time. So, yes, lets do both!