Rheumatoid Arthritis on Women’s Hour

September 14, 2009 at 9:12 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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There was a little feature about R.A. on Women’s Hour on radio 4 a couple of weeks ago. Nothing Earth shatteringly new for those in the know, but quite interesting. It was talking about trialling the use of rituximab early on in the disease, instead of doing as NICE now recommend and not letting people have it until they’ve failed three or four other biologics. It’s here.

One bit that caught my ear was this, a quote from Dr John Isaacs at Newcastle: “One thing that all rheumatologists are pleased about is that NICE are confirming what we’ve been saying for years, which is that we need to be more aggressive with this disease. So previously patients like Wendy would be seen perhaps once every three months, or once every six months, and now we’re being told that certainly in the early stages of the disease we need to see patients every month, and if treatments aren’t working then we need to be escalating treatments, changing therapies …”

Well I’m not sure how pleased the Norfolk and Norwich are about the new guidelines. “We can’t possibly manage to see people every three months. We’ll see you every six months if you’re lucky.”

These are the sorts of things a positive thinking, celebratory penguin will be trying not to say in Spain next week!

Pollyanna Penguin’s (hopefully) Big Adventure

September 14, 2009 at 7:49 pm | Posted in rheumatoid arthritis (RA) | 3 Comments
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I’ve been invited to an (almost) all expenses paid trip to Barcelona next week for an event about managing R.A.! I just knew there had to be some perks to having this dratted disease! Always look on the bright side, I say – and this time the bright side is taking me to (hopefully) bright and sunny Spain.

I had an email sent through the National Rheumatoid Arthritis Society in mid-August saying that this event, My Day for R.A. (www.mydayforra.com), was taking place and that if you wanted to be involved you had to fill in a form telling your inspirational/positive story about living with R.A. They apologised for the short notice but they’d only just been told about it, about three days before the deadline of 14 August.

Well, work was fairly quiet so I thought what the heck – nothing ventured etc. and filled it in.

Fast forward three weeks to Penguin on holiday in sunny Sussex – in fact sitting on Brighton beach soaking up the sun and lapping up an ice cream – when the phone goes. It’s my colleague saying, ‘Can you phone this woman urgently – something to do with an R.A. event or something …’ So I did, and it was a nice young lady wondering if I’d got the email inviting me to the event in Spain … which of course I hadn’t.

Short notice seems to be a feature of the whole event – they said they’d let all shortlisted people know by end August, then sent round an email that said there would be a delay due to the large number of responses. They let me know on 10 September and I’m (hopefully) flying out on Sunday 20 September … but I have yet to receive any flight details. I’ve got to get myself to the airport, after which they take over and arrange everything … hopefully! They pay for the travel to the airport too, just ask you to arrange it … which is fine, provided they tell me sharpish which airport I’ll actually be flying from and when!

It should be a really interesting event – people from all over Europe discussing their ways of dealing with R.A., and culminating in a celebratory dinner featuring Jane Seymour (Dr. Quinn, Medicine Woman, bond girl in Live and Let Die, and, by astonishing coincidence, on the cover of the book I’m reading in my ‘gravatar’ photo on my home page, as Lady Blakeny in The Scarlet Pimpernel, amongst many other things). They hope it will also feature lots of journalists for some good publicity for Wyeth Pharmaceuticals who are funding it, and hopefully also to improve people’s understanding of R.A. – both those who’ve got it and those who haven’t and make those annoying comments about ‘Oh, isn’t that wear and tear on the bone’ etc. etc. They’re even providing participants with a workshop on how to deal with the media – so if nothing else, that might well have some useful learnings!

I’m really hoping that there’ll be a little bit of time to see something of Barcelona before they fly me home again on Wednesday – we shall see. Either way, I’m looking forward to it and hoping it makes a contribution to people’s understanding of rheumatoid arthritis!

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