ARCHIVES
FOR SJOGREN'S...SIMPLIFIED
Key Concepts
Sjogren's is complex. Learning about it shouldn't be.
Introduction
​To increase your chances of successfully advocating for care for Sjogren's, Sjogren's Advocate describes Sjogren's disease using accurate medical and scientific language.
But the technical language and volume of information on Sjogren's Advocate can be overwhelming.
​
This page describes Sjogren's using simpler language and directs you to important information and resources on Sjogren's Advocate (of which you may be unaware) that will help you more successfully advocate for care.
​
Most of the entries below can also be found on our Facebook and Instagram accounts. The most recent entry in this series will be at the top of this page. ​
Follow us: @sjogrensadvocate
The Truth About Sjogren's - published 04.05.2025
SELF-ADVOCACY RESOURCES
​
Many doctors are still taught that Sjogren’s is a rare, mild, dryness syndrome primarily affecting middle-aged women. In reality, Sjogren’s is a serious, systemic disease that can impact any part of the body and, occasionally, can be fatal. The incorrect portrayal of Sjogren's leads to missed diagnoses, delayed diagnoses, and inadequate care.
​
The truth about Sjogren’s disease:
-
Sjogren's is common, not rare. Sjogren’s disease affects approximately 1 in 100 people in the US (most cases are undiagnosed), similar to the prevalence of rheumatoid arthritis (RA) and three times that of lupus.
-
There is no dryness-only version of Sjogren’s. If fact, not everyone with Sjogren’s has dryness.
-
Quality of life and function is worse on average than it is for better known related diseases, RA and lupus. This is mainly due to fatigue, cognitive dysfunction, and pain, not dryness.
-
Although 9 out of 10 Sjogren's patients are women, Sjogren's can affect anyone, at any age, including men and children.
-
Sjogren's often starts in childhood or early adulthood, but diagnosis is frequently delayed for years, when the disease has caused significant damage and symptoms become difficult to manage.
Sjogren's Increases Heart Disease Risk - published 03.22.2025
SELF-ADVOCACY RESOURCES
​
-
Heart Health and Sjogren's Disease blog post by the Sjogren's Foundation
​Living with Sjogren’s increases your risk of heart disease, including heart attacks, strokes and pulmonary embolism.
Although Primary Care Practitioners (PCPs) are generally responsible for monitoring and managing heart disease risk, they often fail to do so in patients with Sjogren's.
Why? Because many PCPs remain unaware that Sjogren’s is a systemic, inflammatory disease that increases your risk of heart disease.
Advocate For Yourself
Use the self-advocacy resources listed above to work with your doctor to reduce your risk of heart disease, a major cause of premature death in Sjogren’s.
​
Be Part of the Change, Take the Survey
Dr. Alessia Alunno, a rheumatologist conducting research on Sjogren’s, is currently surveying heart health in people with rheumatic diseases. Sjogren’s is often underrepresented in studies like this. Your participation is crucial to ensure Sjogren's patients are accurately represented. Click here to take her survey. To take the survey in English, click the British flag.
Sjogren's is Systemic - published 03.01.2025
SELF-ADVOCACY RESOURCES
Most doctors and patients know that Sjogren’s causes dry eyes and dry mouth.
But it’s important to understand that Sjogren's is never just about dryness. Sjogren's can affect almost any part of the body, not just the moisture-producing glands. These other problems, caused directly by Sjogren’s disease and that are beyond dryness, are called “systemic manifestations”.
Finding and treating these systemic manifestations of Sjogren’s early can help slow the progression of the disease, make you feel better, and in some cases, even save your life.
If your doctor believes Sjogren's is mainly dry eyes and mouth, they're likely to miss serious systemic manifestations.
HOW TO USE SJOGREN'S ADVOCATE
DESKTOP USER
MOBILE USER
Updated 04-25-2025