Who would like 15 minutes (or more) of fame? (Star on Hollywood Walk of Fame not guaranteed)

For those who don’t know me yet I have taken on the job of Public Relations and Press Officer at NRAS. If I’ve not said hello to you before then ‘hello’. If I have said hello to you before then ‘hello again!’

Since joining NRAS it has been made clear to me that one thing that needs to change is the distinct lack of awareness among many people across the UK of what rheumatoid arthritis is. I know there is a lack of awareness because up until the point I applied for this job, I was one of those people who lived in ignorance (something I confessed to in my last blog). I look at one of my roles as being to improve this and help increase awareness of rheumatoid arthritis among the population, highlighting the key point that it is not an old person’s condition and it is not the result of wear and tear.

We have potentially been given the opportunity to feature in a national magazine and with this comes the opportunity to get our message across that young people get RA too. For this I will need a case study featuring someone of a young age (20s/30s) and obviously the case study would need to have a story behind it – perhaps demonstrating how you overcame adversity. I would also be looking for a female as it is for a woman’s magazine – Now / Closer etc. I’m sure many of you will have read similar magazines in the past so will know the type of stories they feature.

If you are a willing volunteer then please do get in touch with me – [e-mail]. This is an amazing opportunity for us develop a greater awareness of RA and encourage support.

[helixhelix]

Sounds like you need little_em......

[Hidden in reply to helixhelix]

agreed

[dmc12]

Hi

What a great thing to do, unfortunately I am too old (41) but I hope you get some positive response for this. RA is a terrible disease and I had not realised (despite having this since my teens) how much it affects. I now have RA lung disease, RA in my eyes (go figure!) and I am on waiting list for knee replacements. Despite this I work and want to continue to do so but have battles with my employer every time I am off work. Hopefully raising the awareness will support all of us with this condition.

Donna

[Gilliam in reply to dmc12]

Hi dmc12

I have been looking at some of the posts on this site as I have recently joined this and the British Lung Society site, and came across your comment. I too am in my early forties and have RA since about 7 years old. I now have complications with my lungs and on O2 and have just had a hip replacement! Seems like we are in a very similar boat. Unfortunately I am not able to work but I do try to keep as active as I can. It would be nice to hear from you.

[dmc12 in reply to Gilliam]

Hi gilliam,

Good to hear from you and I hope you are doing ok after your hip replacement. I was diagnosed with RA lung disease two years ago due to persistant cough and tests showed fluid and nodules on my lungs, thankfully two years later they have not changed and I have now been discharged from lung clinic & just see my RA specialist re this. I manage with steroids for my lungs so you do sound to be poorly with yours, hopefully your treatment will keep your condition stable, Have you had any recommendations re lung disease? I found this site and NHS direct very useful for information. Take care Donna

[Hidden in reply to dmc12]

Donna - don't be so quick to rule yourself out, 41 is certainly not too old. If you'd like to email me a bit more about yourself then I'm sure between us we could put something together. If I can send a few case studies to the writers then they will be able to pick one they think is the most suitable for their readership.

[Hidden]

Little em would be ideal for an article like this.

Great to have you fighting the ra cause as there is so little info out there. Just to add another thought - i think the term Rheumatoid arthritis makes the job of raising awareness that much harder. As soon as people hear arthritis they have already closed their mind to further information. This has grave implications for sufferers of the disease with regards to employment, benefits and family life.

I really really wish the powers that be would make the decision to change the name, there is great support for this among those that have it. Could NRAS campaign on my behalf?

[Hidden]

As well as Little em, Julie, (ra/fybro) was the first to come to my mind also, and Mel; these ladies are amazing

[sharlynn]

I agree totally with mads regarding the name. It is an awful disease, i have suffered with this since i was 27 and it is now really bad. I am having a really bad flare up at the moment and the only thing i am stressing about is work, they are great with me but the guilt i have is bad. My family, friends and work colleague say they understand and bless them they do help but with some comments they come out with shows they don't fully comprehend the pain and feeling unwell i have. As to professionals i don't think they understand the depression that can go along with it so i definately feel an article would be great. I often wonder if getting one of the soaps on tv to run a story on it would really open things up.

[Hidden]

Thanks for all your responses guys, I really appreciate it. It sounds like I need to get in touch with Little_Em (I assume this is the same person as Little_Em18?)

I've heard the comments about the name quite often since joining NRAS and I have to say I completely agree with you - people hear 'arthritis' and just assume old person. Unfortunately I think a name change would be more difficult to achieve but just making sure that people are aware that RA is different to other forms of arthritis is a start.

[allanah]

Come om little em and julie volunteer!!!! Axx

[little_em18]

Hello!

This is something that I would really like to be involved in! I would love to be able to have a chat with you about this if at all possible?

Let me know,

Emma

[Hidden in reply to little_em18]

Thanks Emma, that would be great. Although it didn't look like your fellow bloggers left you much choice If you want to get in touch either by email or phone [phone] - if you let me know your number I can phone you straight back so it's not on your bill) then that would be great.

[little_em18 in reply to Hidden]

Hi Andrew Is it possible you could contact me via email and then we can decide a time which would be best to ring? Im at work all day everyday at the moment so its easier for me to pick up my emails and respond that way. My email address is [e-mail]

Im looking forward to hearing from you!

[Hidden in reply to little_em18]

Yay! Go girl! x

[Hidden]

Many thanks for all the responses I have received. It's quite overwhelming that so many people are willing to share their experiences, both good and bad. The next stage is that I will send a selection of case studies to the writers who will decide which stories are more appropriate for their particular readership.