Friday, June 26, 2009

The UK's "Campaign Against Ignorance" of Rheumatoid Arthritis

Studies show that people do not understand very much about Rheumatoid Arthritis. There are many misconceptions. But, you probably already figured that out on your own.

In the UK, the National Rheumatoid Arthritis Society is trying to change that. They have an entire campaign about it. They call 2009 the “Year of Rheumatoid Arthritis.”

The director of the NRAS said that they were shocked at the “alarming ignorance” about RA. People do not realize what the symptoms are or who gets Rheumatoid Arthritis. They confuse it with Osteoarthritis a.k.a. “regular arthritis” or OA.

There is also confusion about the seriousness of the risks involved in RA, such as heart disease. It is not seen as a systemic disease. People do not recognize how it brings suffering and disability.

When I first heard about this “Year of RA,” I told friends it was the “coolest thing since ice cream.” I even sent a link out in an email. It was proof of what I knew by experience – and it’s always good to be validated.

I told one rheumatologist about the UK campaign and he called it unnecessary. He said, “I don’t think people are confused about RA. They know enough.” At the time, I was too shocked to reply.

But now I realize that it was a clue to our predicament. That same guy did not approve of using the internet to research RA. (I had given him a printout of the UK NRAS campaign article.) I guess he felt like knowledge is dangerous.

He is not worried about whether people understand Rheumatoid Arthritis. He does not encourage patients to learn more about RA. He does not approve of passing around printouts from the internet. He has never read an RA blog. He is ignorant of the ignorance.

But ignorance is not harmless. Ignorance of Rheumatoid Arthritis is especially dangerous. People who are already affected may not be able to receive the support that they need. Others may not receive an early diagnosis due to ignorance of the disease.

The UK campaign also seeks to encourage early treatment of Rheumatoid Arthritis. That is the only key we know which may help curb damage. People do not seek treatment if they do not know what RA symptoms are or that it is a serious life threatening disease.

So here is our situation: most people do not know what RA is. But, we know a lot about it. We need to speak up. We need to declare war on ignorance just like they are in Britain. We cannot wait for the medical professionals to do it for us. Some of them may be satisfied with the status quo.

6 comments:

Noelle said...

Cheers to the UK's NRAS! Maybe if we all keep little Arthritis Foundation leaflets with us at all times and just pass them out to friends and acquaintances when we see quizzical or "deer in the headlights" looks, we could educate, educate, educate.

Kelly said...

Noelle, you go girl!

Frankincense2009 said...

Hi Kelly, I followed you here from the arthritis blog on about.com.

I'm not so surprised people don't know much about RA - most people who have RA just say
'I have arthritis' so others dont know which type - and then again most are just happy to take the pills the doctor prescribes and leave it at that. I guess the average RA patient just wants to get on with life without finding the little tasks too difficult - that's the demoralizing bit.

Cheers!

Kelly said...

Hi Frankincense,
Welcome to the R A W!

We have talked quite a bit about education on this page. May I recommend folks also check out So glad your RA is cured and Transparency and the Wall and several comments attached.

It did take me a few years of being "demoralized" as you say to come to this point. At this point I am ready to "fight" so that people will get earlier treatment and whatever help that they need.

I cannot speak for others, but if I am asked,I say that I have "RA".
ANYBODY ELSE?

Synovial Sensation said...

I always start off by saying I have an auto-immune disease, usually prefaced in my case with I haven't gone back to work since my last baby was born because childbearing has triggered illness. Or an array of them :)

Then I say it's RA, which cuts down mightily on the 'my old nan had dodgy knees from 5 decades of being a maid' comments (not that I don't feel for hypothetical-her of course). It certainly allows people to ask increasingly intelligent questions.

I usually follow up with a lightening guide to auto-immune diseases they may well of heard of and say how glad I am I've 'only' got RA and auto-immune hypothroiditis and an inflammed gut. And not type 1 diabetes, multiple sclerosis,lupus etc. I find mentioning these other somewhat better known issues helps people get in the RA ball-park.

Kelly said...

Very smart, Synovial.