Misconception - Barriers to understanding RA

Misconception  - Barriers to understanding RA

I decided to stray from my typical blog set up this time around and instead of talking about cake, I want to talk about a topic I hear frequently; the misconception of Rheumatoid Arthritis.

Now I’ve been with NRAS for two years, an easy number to count, but I could not tell you how many times someone has heard the ‘arthritis’ in Rheumatoid Arthritis and jumped the gun to thinking I’m talking about an older generation’s problem. I’m so used to this being the reaction, that recently when I delivered a presentation to a group of people unfamiliar with the disease, 30 minutes of the 45 minute presentation was spent informing them of the disease, how it is treated and then how NRAS has a role, before we even got on to the topic of why I was there to speak to them. Now that is the extreme, but I hope that one day we will not need to first explain the disease before we explain the charity.

Fortunately the driving wheels of this process are in motion and NRAS is pleased to bring you the very first RA Awareness Week, to be held between 24th and 30th June this summer.

With this week we want to emphasise the important message that RA is an autoimmune disease with no generational barriers. Most people are still of a working age when onset occurs! Events and activities will be planned throughout the week so if you want to get involved to help us spread the message, watch this space to find out more information about what is happening near you and what you can do to support us. Facebook ( facebook.com/nationalrh... ) and Twitter ( twitter.com/NRAS_UK ) will give you the best updates on the Week and how you can take part.

I do hope you get involved in the week and help us to raise awareness of RA.

Oli

Trust and Grants Fundraiser

7 Replies

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  • Hi!

    I would like to get involved, but the Facebook link wont work - any ideas?

    Thank you

    Pen

  • Thanks Oli - I don't do facebook but I did forward the news about the RA Awareness Day to my local BBC radio station in the hope that they might cover it up here. He had done a sketch making a joke about horse meat curing his arthritis just like that and I emailed in exasperation! He replied saying that his grandparents both suffered from RA and he was well aware that it wasn't a joking matter - but he was just making fun of the horse meat debacle. He said he would like to do an RA week to coincide with the National one and asked me who to contact up here.

    I suggested they find younger sufferers than me to speak about their experience living with RA. I'm afraid I then became useless to him because I could only suggest he contact our local branch of Arthrits Care or NRAS head office but he wanted a local contact. When I phoned their contact number I got a rather grumpy and elderly sounding OA sufferer who said "the young ones are only interested in meeting each other in the pub - they won't come to our AGMs or monthly meetings so what can we do?". To be honest, having heard the notices for these meetings being read out on the radio, describing homebakes and tea, bingo and raffle plus music from the accordian and fiddle club - I can quite see why! I gave him the name of the senior physio who administrates the rheumatology service here but hadn't a clue what else to suggest. I hope they contact NRAS for more info but I won't hold my breath!

    I know this is a ongoing hot potato but I do find it so much easier describing RA as Rheumatoid Autoimmune Disease. Tilda

  • Meeting in the pub sounds pretty good to me, and I'm not young. Or maybe by his standards I am!

  • Me too - but how to identify them and ask them if they would like to speak about RA on the radio is another matter! Tilda xx

  • I have tried your facebook link but it does't work! Can you please send us a working link please?

  • Hi I think that this might be the working link.

    facebook.com/nationalrheuma...

    A bit seemed to drop,off the end lol

    Steph

  • Hi Folks,

    Sorry about the links, now corrected:

    facebook.com/nationalrheuma...

    twitter.com/NRAS_UK

    Thanks Tilda for trying to get the BBC involved. We now have a PR and Press Officer in our team and he can be used as a contact for sourcing volunteers or acting on media opportunities - should have mentioned in the blog - however, contact details andrew@nras.org.uk & 01628 823 524.

    I hope we can have you all involved in some way!

    Oli

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