Tuesday, January 28, 2014

What Would Rheumatoid Awareness Mean To Me?

In honor of Rheumatoid Awareness Day on February 2nd, Kelly Young at RA Warrior proposed a blog carnival so people could share what rheumatoid awareness means to them. I thought I’d share some of what I believe to be the necessary conditions of a sufficiently aware public:

[Image: Illustration of a groundhog and a Rheumatoid Awareness Ribbon. Text reads "Rheumatoid Awareness Day: Bringing rheumatoid disease out of the shadows: February 2nd: Learn more at rheum4us.org"]

• Public recognition that Rheumatoid & Autoimmune Arthritis often affects children, involves systemic damage, and can be deadly.

• Awareness that “arthritis” is a symptom, not the disease. Two of the most common diseases that involve this symptom are Rheumatoid Disease and Degenerative Joint Disease.

• Every hospital system having access to a Pediatric Rheumatologist. There are roughly 300,000 children in the US with Rheumatoid & Autoimmune arthritis, yet there are only 250 board-certified Pediatric Rheumatologists. JRA is roughly 28 times more prevalent than all types of pediatric cancer (10,400 in 2007), yet there are 1,900 board-certified pediatric oncologists. Awareness would change this.

• Institutional accommodations must exist specifically for disease flares. Current disability accommodations in jobs and universities are hard enough to acquire, and most aren’t suited towards people who have disease activity that fluctuates. Current accommodations generally do not involve a flexible absence policy, which would allow those who experience extremely disabling flares intermixed with periods of ability to participate in a more meaningful way.

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