Links to Sjogren's-related publications by Sarah Schafer, MD and Sjogren's patient

Articles published in Sjogren's Foundation newsletters and blog

Caring for others-and yourself-while living on the edge  (2011)

How to talk to your family about Sjogren's  (2014)

Sjogren's vs sicca syndrome (2014)

Why doesn't my doctor understand Sjogren's?  (2017)

Speak out rheum: Under the Radar

Comments about this article:

This article was published in The Rheumatologist, a newsletter of the American College of Rheumatology, 2013. Some parts are a bit dated but the overall problem of Sjogren's Neglect remains the same.

At time I wrote this, the actual prevalence of systemic manifestations was just starting to be understood. I quoted an unrealistically low number for this. Over the past decade, it is become clear that Sjogren's is always systemic and that serious complications are much more common then previously realized. Common systemic features often remain undiagnosed, including  lung disease and neuropathies. Many journal articles still quote unrealistically low numbers (such as the 20-40%) for the number with systemic manifestations.

My wish for better research is starting to come to fruition. Unfortunately, since I wrote this article, clinical practice has made little headway, and often does not reflect current Sjogren's knowledge. Sjogren's medical education remains practically non-existent. 

My intention for writing this article was to prod rheumatologists into getting more engaged with Sjogren's care. There were many responses to the article- from patients. Not a single rheumatologist wrote a comment, which makes me wonder if they read my article. PCPs and patients seem to be much more interested in learning about Sjogren's than rheumatologists.  

Updated 3-21-21