NRAS: Improving Awareness Of RA

NRAS

NRAS Calls For A Public Awareness Campaign To Improve Time To Diagnosis And Treatment

The National Rheumatoid Arthritis Society (NRAS) has today called for a national campaign to improve awareness about Rheumatoid Arthritis so people can seek swift treatment and prevent long term joint damage and disability. This follows the publication of research by the National Audit Office (NAO) that has revealed a very worrying lack of awareness about RA among the public, health professionals and commissioners.

(July 15, 2009)

Full NRAS Press Release

Rheumatoid Services Are “Failing”

Tens of thousands of patients with rheumatoid arthritis (RA) are not being diagnosed or treated quickly enough, says a watchdog.

The National Audit Office says over half a million people in England live with the disease, with 26,000 new cases a year – double the current estimate.

But only a tenth are treated within three months of symptoms starting, as ideally they should be.

(July 14, 2009)

Full BBC News Article

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Two Novelists With Arthritis Share Their Stories

Aches & Pains

Aches & Pains

“Here is a great gift of wisdom and humour for anyone coping with actual aches and pains. Based on the author’s own experience as a hip-replacement patient, she provides funny insider advice about coping with the ordeals of surgery, a hospital stay, and at-home convalescence.

Highlights include: 10 little jobs you can give to anyone who innocently asks, “How can I help?”; dignified ways to cope with all the indignities of baring your body to strangers; great gifts to suggest when someone asks, “What can I bring you?”; and tips on dealing with visitors…and hospital food…and medical professionals. Far more entertaining than a potted plant! Read wonderfully by Kate Binchy.”

Arthritis: Maeve Binchy And Martina Cole Share Their Experiences

“Two best-selling novelists, Maeve Binchy and Martina Cole, suffer from arthritis but have refused to be downcast or to let it impede their work. Here they describe some of the prejudices they suffered and the cunning ways they devised to keep their condition secret. Both women, in different ways, have resolutely adapted to one of our most intractable, common and poorly-understood diseases.”

Read the full story from The Telegraph…

Thanks to Sunita (ClematisWaves) for sharing this article with me.

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RA Guy’s News Ticker

As I get some bed rest this afternoon (don’t worry -for the most part I am okay, but some of the pressure bearing joints in my toes decided to act up, so I decided to give them a rest) I spent some time working on my blog.

For a while I’ve wanted to add a ticker on my site, in order to include news links related to Rheumatoid Arthritis, Lupus, Lyme Disease, and Autoimmune Diseases.

With a little help from Google’s AJAX Search API, I was able to include everything I wanted, with a style that fits in perfectly with the rest of the page. So this ticker will be up there from now on. It’s the last item on the page to load, since it takes a few extra seconds to load. Click on an item whenever you want and it will open in a new tab.

Enjoy!

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Poor Liam

Poor Liam

Poor Liam was written by Jack McGlone for his brother Liam, who lives with Juvenile Arthritis. It’s a wonderful little book (I particularly enjoyed the drawings!) that will take you just a few minutes to go through, so be sure to take a look!

Don’t forget, July is Juvenile Arthritis Awareness Month.

Thanks to Michelle at ArthriticJoints.com for sharing this wonderful book that she found on the Arthritis Foundation website.

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Are Your Lab Results “Normal”?

Abstract from The Journal of Rheumatology.

Erythrocyte Sedimentation Rate, C-Reactive Protein, or Rheumatoid Factor Are Normal at Presentation in 35%–45% of Patients with Rheumatoid Arthritis Seen Between 1980 and 2004: Analyses from Finland and the United States

Objective: To analyze erythrocyte sedimentation rate (ESR), C-reactive protein (CRP), and rheumatoid factor (RF) tests in 2 databases of consecutive patients with rheumatoid arthritis (RA) over 25 years between 1980 and 2004, in Finland and the USA.

Methods: Databases of 1892 patients of 7 rheumatologists in Jyväskylä, Finland, and 478 of one author in Nashville, TN, USA, seen in usual care, were reviewed for the first recorded ESR and CRP, and all RF tests.

Results: Median ESR at presentation was 30 mm/h at both sites. Mean ESR was 36 mm/h in Jyväskylä and 35 mm/h in Nashville. ESR was < 28 mm/h in 45% and 47% of patients at the 2 sites, respectively. CRP was normal in 44% and 58%, and all RF tests were negative in 38% and 37%, respectively. Both ESR and CRP were normal in 33% and 42% of patients, and all 3 tests were normal in 15% and 14% of patients in whom they were assessed. All 3 tests were abnormal in only 28% in Jyväskylä and 23% in Nashville.

Conclusion: A majority of patients with RA seen between 1980 and 2004 had abnormal ESR, CRP, or RF. However, more than 37% of patients had ESR < 28 mm/h, normal CRP, or all negative RF tests. Similarities of laboratory test data at 2 sites on different continents with different duration of disease suggest generalizability of the findings. Normal ESR, CRP, and RF are seen in a substantial proportion of patients with RA at this time.

Accepted for publication January 23, 2009.

My lab results have almost always come back “normal”, even during the worst of flares. My rheumatologist jokingly rubs his eyes to make sure he is seeing correctly, but luckily he has never suggested that I don’t have rheumatoid arthritis.

In the past I’ve been told that I was part of the 20% of RA patients that always have a normal sed rate, negative RA Factor, etc. From this study, it looks like that number can be as high as 37%!

If you are part of a health care plan that requires referrals to specialists, and your general doctor refuses to send you to a rheumatologist based on the results of your blood work, be sure to point him/her to this study.

Thanks to Nikki for posting about this topic at RA Connect.

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