The real reason for Sjogren's Advocate
Updated: May 26, 2020
A few people have asked me why I created a totally new website about Sjogren’s. After all, doesn’t the Sjogren’s Foundation (SF) already have a good website, www.sjogrens.org?
Yes, it does! The SF is the reliable, up-to-date source for a wide range of Sjogren’s information. I highly recommend their materials, and frequently link to their website. The SF provides valuable support to patients, providers, and researchers. I am in awe of the work they do with a small but talented staff, all on a very limited budget. I encourage everyone to join and to support the SF 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 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. Sjogren's 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 an eye-opener. Before starting each presentation, I go around the room and ask the clinicians 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 The vast majority of PCPs hold the outdated notion that Sjogren’s is not serious, but just a nuisance sicca disease.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. To date, not one PCP has indicated that they have ever considered Sjogren’s as a possible new diagnosis in a patient.
3. Only a handful of clinicians said that they had encountered even one Sjogren’s patient in all of their years of practice.
This is a sad state of affairs. Sjogren's is a serious systemic disease that impacts about 1 % of the U.S. 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 how individual lab tests can support a diagnosis. Citations are provided so that patients and clinicians can refer to the primary source materials.
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 SF or any rheumatology, educational, or medical organization. This is my take on things as an educated physician-patient. I saw that 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 experience as a PCP, patient, teacher, and writer. I read the Sjogren’s literature extensively, and have done so for years. My aim is to distill complex information into "plain English" and to provide practical tools for both 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. They should not need to explain to their providers why timely diagnosis and treatment are important. I hope that rheumatology leadership will provide more guidance and promote better Sjogren’s medical education in the near future.