• Sarah Schafer, MD

The Real Reason for Sjogren's Advocate

A few people have asked me why I created a totally new website about Sjogren’s. After all, doesn’t the Sjogren’s Syndrome Foundation (SSF) already have a good website, www.sjogrens.org ?

Yes, it does! The SSF is the reliable, up-to-date source for a wide range of Sjogren’s information. I highly recommend their materials, and frequently link to resources on their website. The SSF provides valuable support to patients, providers and researchers. I am in awe of the work they do with a small but talented staff on a very limited budget. I encourage everyone to join and to support the SSF in every way they can.

My work intends to complement, not replace the information at www.sjogrens.org. My primary goal is to provide specific tools and strategies to help patients navigate a medical system that often fails Sjogren’s patients. Lack of education of PCPs and other “front line” clinicians is a major contributor to delayed diagnosis and inadequate disease management. Even some rheumatologists are so disengaged from Sjogren’s that they tell patients incorrectly that Sjogren’s is not that serious, or that it does not need treatment. I hear repeated stories online from patients who have been told (also incorrectly) that they can’t have Sjogren’s with a negative SS-A. While I hope that most rheumatologists are up-to-date, Sjogrens Advocate helps patients go to bat for themselves when these situations occur.

Perhaps the biggest motivating factor for creating this site comes from my experience teaching more than 200 PCPs (including GYNS) about Sjogren’s over the past five years. This has been a real eye-opener. Before starting each presentation, I go around the room and ask the clinicians what they know about Sjogren’s. I also ask about their experience with Sjogren’s patients. Here is what I found out:

1. The vast majority of PCPs hold the outdated notion that Sjogren’s is not serious, but just a nuisance sicca disease.

2. Not one PCP indicated that they ever considered Sjogren’s as a possible new diagnosis in a patient.

3. Only a handful of clinicians said that they have encountered even one Sjogren’s patient in all of their years of practice.

This is a sad state of affairs for a serious disease that impacts about 1 % of the population. Here’s the good news: Most PCPs seem eager to learn!

Clearly, there is a gaping hole in medical education. Sjogren’s Advocate is set up to help PCPs recognize common presentations and take the first steps to diagnosis. It answers questions that both patients and PCPs have, such as the meaning of individual lab tests used for diagnosis. Citations are available so that patients can use them in discussions with their providers.

The information contained in this website and blog is my sole responsibility. Much of the content draws on material that I use during my presentations. My teaching curriculum was reviewed- and approved by- several respected rheumatologists with Sjogren’s expertise.

The information herein is not officially sanctioned by the SSF or any rheumatology, educational or medical organization. This is my take on things as an educated physician-patient. I saw a need that was not being met, and stepped up to the plate. My work is informed by my background in medicine and science, as well as my own experience as a PCP, patient, teacher and writer. I read the Sjogren’s literature extensively, and have done so for years. I have the fairly unique skill of being able to distill complex information into a usable format for patients and PCPs.

This website should not be necessary. Clinicians should already know this information; it should be taught as part of the core curriculum during medical school and residency. Patients should not have to figure out on their own that they might have Sjogren’s or need to explain to their providers why diagnosis and treatment are important. I hope that rheumatology leadership will provide more guidance and promote Sjogren’s medical education in the near future.