Links to Sjogren's-related publications by Sarah Schafer, MD and Sjogren's patient
Article published in The Rheumatologist, a newsletter of the American College of Rheumatology, 2013
Comments about this article:
Some parts are a bit dated. The time to diagnosis, from seeking diagnosis is now a bit under 3 years (vs. 4.7).
Note that time to diagnosis from symptom onset is much longer, often decades.
Many journal articles still quote unrealistically low numbers (such as the 20-40% I indicted) for the number with severe systemic manifestations. 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 common complications such as lung disease and neuropathies.
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.