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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Could I Have Lupus?

Could I Have Lupus

The Could I Have Lupus? campaign is designed to heighten awareness and create a sense of urgency about lupus. With the help of women who are actually living with lupus, we are sending a message to women who are suffering from lupus symptoms — that they can find support, hope and, most of all, answers. They just have to start by asking the right question: “Could I have lupus?”

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Juvenile Arthritis Awareness Month

The month of July is juvenile arthritis awareness month in the United States.

Juvenile arthritis (JA) refers to any form of arthritis or arthritis-related condition that develops in children or teenagers who are less than 18 years of age. Approximately 294,000 children under the age of 18 are affected by pediatric arthritis and rheumatologic conditions.

For more information, visit the Arthritis Foundation’s Juvenile Arthritis Alliance.

Arthritis Foundation Logo
Don’t Forget to Contact the FDA Today

JA Registry Needed Now!

We need your help!

The Arthritis Foundation has been advocating for many years for the creation of a juvenile arthritis registry. A JA registry would improve the care children with arthritis receive. It would help pediatric rheumatologists make better decisions about the type of medications our children need and it could serve as an early warning system if there are unintended side effects or outcomes of JA therapies. The Arthritis Foundation testified last month at the Food and Drug Administration (FDA) recommending that such a registry be established:  http://www.arthritis.org/murphy.php

Now it is your chance to let the FDA know we want them to continue their commendable work in this area and make our dream a reality – the creation of a fully funded JA registry that would help our kids! Click here to learn more, take action and become an advocate!

Please personalize your letter with your individual story and feel free to include some or the entire letter which can be downloaded here.  Please submit your comments either by regular mail or email by July 14th to:
Division of Dockets Management
(HFA-305), Food and Drug Administration
5630 Fishers Lane, rm. 1061
Rockville,  MD 20852
Or
Submit electronic comments to http://www.regulations.gov/fdmspublic/component/main?main=SubmitComment&o=09000064809306d1
All comments should be identified with: Docket No. FDA-2009-N-0145

I must admit that when I first heard of this proposed registry, I was a little reluctant to support it – based on privacy concerns. But I had done quite a bit of research on autoimmune illnesses as a whole during the past few weeks, and one of the things that stood out to me was researchers talking about the importance of such registries in their endeavors.

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Arthritis Song By Chris Kirby

I am sitting here on this Sunday afternoon rubbing my hands together, literally, trying to lessen their pain. So it was with much joy that I read arthritisfriend’s blog post Guitar Strings and Joint Pain: Musician Chris Kirby Changes His Style.

Don’t miss this post, don’t miss the lyrics, and don’t miss listening to the song (there’s link at the bottom of the post).

“Hands, don’t you quit me so easily
You don’t even know
Though you’ll never need me
Don’t go

I’m losing my hands
Years by the hourglass
So don’t tell me not to be scared
Until you play by the rules
Of heroes and fools
And lose
And be no better for it”

Arthritis Song
Chris Kirby

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