'Misconception - Barriers to understanding RA' by Oli Hoare

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 ( www.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

'The value of social media' by Deborah Flitter

 

Dear all, I can’t believe that it’s nearly spring again. It’s so nice to be able to see where I’m going when I leave work at the end of the day, though I have a 30 mile journey so it will be a few weeks before I am no longer arriving home in darkness. I’ve found a lovely cross country route to drive along and am looking forward to enjoying the lovely countryside...anything not to have to suffer the M4 every day!

I found with the dark evenings, that I began to spend some time on facebook which is a bit different from the forums I used to frequent. I’ve been an avid user of forums ever since I’ve owned a PC, mainly on music fan sites chatting away to people who share my (some would say) dubious tastes in music. I have made some wonderful friends who I’ve been to concerts with and who have extended beyond the initial interest groups. We have often discussed that our useage of the forums suited times of our lives when maybe we needed a little extra support or just someone to chat to who understood something we were going through. The forums provided the perfect vehicle to make friends and maybe their initial subject matter for me was irrelevant.

I am gradually getting to grips with facebook, keeping in touch with old friends that I don’t see much and most importantly, using it to very slowly build up a relationship with some extended family members who entered my consciousness rather unexpectedly a couple of years ago. It’s proving to be a fascinating journey!

Socialising online has been a very positive experience for me and I find comfort in the thought that should I ever need support for anything health related, I will have no problem accessing information and forums, and I will be able to find other people who will understand what I am going through.

NRAS does fantastic work using social media to communicate with and to allow communication between people living with RA, including Facebook, Twitter, NRAS HealthUnlocked and our own members forum. I imagine that if you’re reading this blog you may already be aware of the power of social media but if you haven’t yet explored this then please do. Also if you have time we would really value your participation in our current survey The value of Social Media to those living with Rheumatoid Arthritis. You can find the information about this on our website.

Happy socialising!

Deborah Flitter

PA to Chief Executive

'You never know what’s round the corner......' by Gill Weedon

I have spent most of my working life in Finance and Payroll and my happiest working days were from 2004-2011 as the Finance and Office Manager for a Management Consultancy. When that job relocated into Central London I took the big (and difficult) decision not to take on the daily commute. This meant the following year was not so happy, I spent my days working on short term contracts with people who seemed to want to do as little as possible in their working day.

My frustration led me to say to my other half ‘I have to find a new job that means I interact with people, but who is going to take me on to do something new at my age?’ Along came NRAS and Clare must have seen something in me meaning she was willing to take on this old bird to try something completely new. I am excited about the challenges ahead being the Volunteer Network and Project Supervisor. We have two new group launches booked in at the beginning of March – Basingstoke and Cambridge and many other prospective new groups in the pipeline. If you would like to know more, or find out about our groups, visit www.nras.org.uk/groups, or just get in touch – gill@nras.org.uk.

I have already enjoyed being out and about meeting patients and HCPs alike. Additionally Kim and I have been scoping the venues for the upcoming training days that you will hear about soon.

The best thing about working at NRAS is that everyone has the same work ethic – what an amazing group of people, they work hard and they play hard.

Wish me luck!

Gill

Volunteer Network and Project Supervisor