• Sarah Schafer, MD

News of 2019 and beyond

Updated: May 21, 2021

I encourage everyone to read the most recent post by Janet Church on her blog, Sjogren’s Life. Learn more about the many accomplishments of the Sjogren’s Foundation in 2019. Much of the work of the Foundation happens behind the scenes. I also encourage everyone to subscribe to Janet’s blog. Not only does she share important news as the Chair of the Board of Directors for the Sjogren's Foundation, but her posts also reflect the wisdom and experience that she has gained living with this disease.


I am very pleased that the Chair of the Sjogren's Foundation Medical and Scientific Board, Dr. Theresa Lawrence Ford, recently delivered a Sjogren’s talk to 800 PCPs. I hear that this presentation was received with much enthusiasm and interest. So many PCPs are motivated to learn about Sjogren’s. I know this from my own teaching experience. Educational opportunities like this, as well as online Continuing Medical Education programs, need to be offered widely. Sjogren’s education for clinicians has been neglected for far too long.

We are so much better off because of the research funding, education, and advocacy work of the Sjogren’s Foundation. Please give as generously as you can to the Sjogren’s Foundation.

It is hard to grasp the monumental time and effort that goes into projects such as the Foundation’s work to get the ICD 10 codes changed. Changes in these billing codes may sound boring, but they have real-world consequences. For many years, Sjogren’s was billed and coded as “sicca syndrome.” This term does not at all reflect the true nature of the disease. Even the billing codes were reinforcing incorrect notions about Sjogren’s that persist to this day!

Some rheumatologists hold on to the outdated notion of Sjogren’s being a mild dryness disease, and some still call it “sicca syndrome.” This view is not supported by current knowledge. Because many patients still encounter rheumatologists who are not up to date, the next major section of Sjogren's Advocate will document the clear evidence that Sjogren’s is a systemic immune-mediated disease. All Sjogren’s patients deserve monitoring for complications and progression, as well as treatment tailored to their particular risk factors and symptoms.

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