Jeremy Vine's Radio 2 programme discussing arthritis with radio doctor!

Have taken this link from the NRAS forum because I felt it would be interesting for those of you on here to have a listen to if you missed it.

Jeremy Vine's Radio 2 programme discusses arthritis with the radio doctor. Rheumatoid Arthritis was talked about and it was explained how different it is from OsteoArthritis.

Here's the link bbc.co.uk/programmes/b00zxpw2

It starts at about 59 minutes into the programme, so after you have a clicked on to listen, you have to slide the bar on the top across to the right place.

Really interesting Do have a listen,

Lyn x

[Seffarig]

Hi Lyn

I actually caught this driving back to work after my lunch break, I found it really interesting, especially how the guest kept trying to emphasis the pain experienced by people with RA. Actually little late back to work as had to listen to it all. Thanks for the link as the OH can hear it. Di x

[Hidden]

Hi Lyn,

I've just listened to it, I've only been diagnosed for a couple of months after having my baby. For my families sake I am putting on a brave/positive face on, I was doing quite well until I listened to this......

I can't stop crying now, it's the worst I've felt for sure and I'm trying my hardest to keep it together. Although informative surely they've missed out talking about the people who manage to live with RA without it taking over their lives?

Sorry, complete meltdown now!!!

[Rachieishere in reply to Hidden]

I had my baby when I was 18 I've had my rheumatoid since then. I'm now in my thirty's. I can really relate I am now currently really severe disabled by it all since having another baby. I thought oh how bad can it get......it got bad.

[Hidden]

Hi! Sorry, I wouldn't have posted the link if I thought people were going to be upset by it. It is a very honest appraisal of the situation and clarifies the difference between rheumatoid and osteo which is so often confused.

Being diagnosed with RA is not a life sentence which many of you seem to think it is. For those of us diagnosed over 10-15 years ago yes we are always going to have problems with ongoing joint damage. As the programme clearly states HUGE advances have been made in treatment over the last ten years and anyone diagnosed in that time has the best possible of chance of DISEASE REMISSION and the prospect of NO JOINT DAMAGE whatsoever.

I live with RA daily, every hour, every minute, every second and have done for the last 23 years. I have had four children (RA started immediately after the birth of my first), I have a husband. I don't sit around crying because ... well ... why waste that energy on something so negative. I won't pretend it hasn't taken over my life because it has but I get on with it and have done since day one. It's about adapting and making the best out of a life situation. It is part of me, that isn't going to change, how I deal with it is what matters.

I am not an insensitive person, far from it, but I believe this radio programme will have gone a long way to dispel the myths that surround auto-immune disease. If this has caused upset I can only think you were not given full information about the diagnosis and prognosis from your consultant at the outset.

Once again, sincere apologies for any upset caused.

Lyn x

[Hidden in reply to Hidden]

Hi Lyn,

Oh please believe me when I say you don't need to apologise, I know I over-reacted to it, just feeling sorry for myself when I should be grateful for how meds have progressed!

Totally over it now just had a bit of a panic.

I actually look out for your blogs as you are so well informed and the advice you give is always balanced and sensitive. Whether you like it or not you seem to be the site 'Mum'!!!

I'm always looking for positive stories, desperate for hope but listening to that was hard. I'm feeling a bit selfish as I don't have any joint damage yet and to get myself in such a 'tis' is a bit melodramatic!

Thanks for your reply and please forgive me if I caused you any upset also. xx

[Hidden]

Hi all

Please see below a message from the Helpline team here at NRAS:

We have also heard this radio programme and while we feel that it was important to emphasise how severe and painful this condition can be, we are concerned that this was not put into context, and can understand that it might have been quite distressing to some people, particularly to those recently diagnosed with this condition. It is important to note that the outlook for this disease is much better today than ever before, and a lot of people suffering the most severe symptoms of the condition would have been diagnosed some time ago, when the treatments were not as advanced.

If anyone has been upset by this, or has any concerns about what was covered in the radio show, please feel free to contact our helpline team to discuss in further detail. We are available from Mon-Fri 9.30-4.30 and will be more than happy to talk this through with you.

Kind regards

The NRAS Helpline

[Hidden]

Hello guys

I dont know if anyone is a carer of a younger person with Dementia or has someone close to them with this but:

I have recently run Dementia Cafes for Younger People diagnosed with Dementia.This is a life limiting illness ( there are a 100 forms) and generally has a prognosis of 2-10 years. You can imagine how afraid the affected individualks and their carers are.

The philosophy of the cafes is that Diagnosis is open and the condition can be talked about honestly between yonger people with Dementia and their carers.

We have people there at all stages of the illness.

This can sometimes be a shock for those newly diagnosed but at the same time it helps individuals to adjust to what living with Dementia may mean. The emphasis is on enabling people to live well with Dementia. I hope that the cafes are informative , empowering and enable the community to share in the same way that we are doing now. I would like to think that the aim of all our communications is to support each other and to enable each other to live as well as possible with RA. Arming ourselves with the facts ceratinly helps that.

Whether we like it or not RA is chronic. often progressive and incurable illness. None of us know the individual pathway that our disease will take. Whether we admitt it or not It is a considerable psychological adjustment to come to terms with that and also to find a way of taking back some positive control. Ideally we would all have access to a qualified counsellor on diagnosis who could assist us with that process. Unfortunately thats not available as yet although our rheumatology nurses seem to be very supportive on the whole.

I feel that we are lucky on this site to have the benefit of several expert patients who can provide ideas and inspiration for managing the condition.

By chewing the fat together we can come up with suggestions regarding what we need out of services in the future but we can only do that if we are able to speak honestly and openly about RA.

That includes being able to go through the process of admittying we are afraid of aspects of our illness ( well done Wiliby) and then being redirected to the appropriate channels of support ............. Sticking together......Solidarity when things are difficult ........ is a great medicine for me

xxx

p s IF you managed to read all this without going to sleep thankyou !