WHAT IS SJOGREN'S (SHOW-GRINS)?
Sjogren’s (SHOW-grins) is a COMMON and SERIOUS autoimmune disease
that is more than just SICCA (dryness);
Sjogren's is always SYSTEMIC.​
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MYTHS ABOUT SJOGREN'S remain widespread.
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Sjogren's is not a syndrome,
is not rare,
is not benign,
is not a nuisance dryness disease, and
is not secondary to any other autoimmune or immune-mediated disease.
Sjogren's is often overlooked.​ Sjogren’s Advocate helps people living with Sjogren's achieve more timely diagnosis and better medical care. Learn more ABOUT SELF-ADVOCACY.
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Key Concepts
What Sjogren's IS
Sjogren's is a SYSTEMIC autoimmune disease that can impact almost every part of the body.
Nearly every Sjogren’s patient who is carefully evaluated will be found to have one or more systemic (non-sicca) manifestations (38, 266). Sicca is common, but not present in every person with Sjogren’s. Sjogren’s can impact every part of the body, including the lungs, nerves, joints, gastrointestinal tract, kidneys, skin, and more. It leads to lymphoma in 5-10% of patients (249). ​​​
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Sjogren's is more than just SICCA (dryness).
Dryness is not always present, or patients may not notice or mention it. Systemic manifestations, especially neurological, may appear before sicca. Sicca is important but overemphasized, leaving many people with Sjogren's undiagnosed.
The next time someone asks, "What is Sjogren's?", say,
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"Sjogren's is a common and serious autoimmune disease
that can impact almost every part of the body."
Myths about Sjogren's remain widespread,
leading to under-diagnosis and inadequate care.
Sjogren's is SERIOUS.
People with Sjogren's live with a high burden of disease. Sjogren’s is associated with excess mortality, both from systemic involvement and from comorbidities such as cardiovascular disease. While most people with Sjogren's do not die directly from their disease, quality of life and function are worse, on average, than they are for people with rheumatoid arthritis (RA) or systemic lupus erythematosus (SLE) (99).
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Extreme fatigue, along with pain and cognitive dysfunction ("brain fog"), contribute to impaired quality of life and function. These symptoms, rather than dryness, are the primary reasons patients struggle with daily activities, socializing, and maintaining employment (197, 240, 243 ).
Sjogren's is COMMON and often overlooked.
Sjogren’s impacts an estimated 4 million people in the US, with women representing 9 out of 10 cases. Sjogren's is about as common as rheumatoid arthritis (RA), and three times as common as systemic lupus erythematosus (SLE), two closely related diseases. Despite this, Sjogren's receives significantly less research and clinical attention than RA and SLE.
Most people with Sjogren's remain undiagnosed because of a lack of clinician training and awareness. People usually seek diagnosis for systemic symptoms, which often impact multiple areas of the body. Due to a lack of familiarity with typical Sjogren's presentations, clinicians often misattribute symptoms to fibromyalgia, anxiety, irritable bowel syndrome, or functional neurological disorder. It is common for people to live with these labels for years or even decades before Sjogren's is finally recognized.
Timely diagnosis and management can reduce disease progression, improve quality of life, and detect systemic manifestations earlier, when they are more likely to respond to treatment. ​​​
Sjogren’s is misunderstood and downplayed.
Sjogren's is still being misrepresented by medical educators and mainstream medical websites as a mild dryness disease, with only occasional (30-40%) systemic involvement. This misconception leads rheumatologists to underestimate the profound systemic impact of Sjogren's, including on patients' quality of life. Regular monitoring for systemic manifestations is crucial for early intervention, which can help prevent or reduce disease progression and organ damage.
What Sjogren's IS NOT
Sjogren's Is Not A Syndrome.
Sjogren’s disease ("Sjogren’s" for short) is a well-characterized SYSTEMIC disease
and should not be called “Sjogren’s syndrome.”
Sjogren's Is Never Limited To Sicca.
Sjogren's should never be called sicca syndrome or a sicca-limited is a disease.
Sicca is important, but not present in every patient, especially early on. ​
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Sjogren's Is Not a Benign Disease Or A Nuisance Dryness Disease.
Sjogren’s is SERIOUS and occasionally life-threatening.
All Sjogren’s patients should be monitored for systemic complications regardless of symptoms or antibody status.
​Sjogren's Is Not Secondary To Another Autoimmune Rheumatic Disease (AIRD).
SJOGREN'S IS SJOGREN'S, whether or not it is associated with another AIRD. ​
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To learn how to counter these and other misconceptions (myths), please visit
USER GUIDE: SJOGREN'S IS MORE THAN "JUST SICCA", MYTHS ABOUT SJOGREN'S, and MYTHS ABOUT DIAGNOSIS.
Sjogren’s Advocate helps you counter myths
and advocate for the care you need and deserve.
​Self-Advocacy Resources
HOW TO USE SJOGREN'S ADVOCATE explains how to find information on the website and blog. Remember to type a few key words into the search bar to look for a topic.
The SELF-ADVOCACY section of Sjogren's Advocate discusses the practical aspects of Sjogren's care, providing tools and strategies for working with clinicians.
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The RESOURCES section connects you to a wide variety of additional resources for support and self-advocacy. ​​​​​
Sjogren's Advocate is just one aspect of my broader advocacy for the Sjogren's community.
Visit the MISSION page to learn more about my many contributions
aimed at improving the lives of people with Sjogren's.​
Updated 09-18-2024