Promoting optimal care for Sjogren's, a common, serious, systemic disease.
WHAT IS SJOGREN'S (SHOW-GRINS)?
Sjogren's is a common and serious autoimmune disease
that can impact every organ and system in the body;
it is never limited to dryness.
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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 a neglected disease.
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 Is Sjogren's (SHOW-grins) or Sjogren's Disease?
Sjogren’s is a COMMON and SERIOUS autoimmune disease
that is always SYSTEMIC (it can impact every organ and system in the body)
and is never limited to SICCA (dryness).
Sjogren’s belongs to the same family of diseases as rheumatoid arthritis and systemic lupus erythematosus. Sjogren's is associated with a second autoimmune rheumatic disease about half the time. When this occurs, you simply have two diseases; one disease is not secondary to the other.
Sjogren’s is often called an autoimmune disease because many patients have autoantibodies such as SSA and SSB. However, 30-40% of patients do not have these autoantibodies.
For a deeper dive, read SO WHAT IS SJOGREN'S, REALLY?​
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The Sjogren’s Foundation also provides an excellent overview of Sjogren's.
Videos To Watch & Share With Family, Friends, And Clinicians
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Every clinician should know that
Sjogren’s is common, serious, and always systemic.
What Sjogren's Is Not
Sjogren's Is Not “Sicca Syndrome” Or A Sicca-Limited Disease.
​Systemic features can be found in nearly every patient who is carefully evaluated.
Sicca is important, but not present in every patient, especially early on.
​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 a disease not a syndrome and is never "just sicca".
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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 antibody status.
​Sjogren's Is Not Secondary To Another Autoimmune Or Connective Tissue Disease.
SJOGREN'S IS SJOGREN'S, whether or not it is associated with another major connective tissue disease.
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​Sjogren's Is Not Rare.
Sjogren’s is a COMMON disease but most patients remain undiagnosed.
Sjogren’s impacts about 1% of the population and is about as common as rheumatoid arthritis.
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Sjogren's Is A Neglected Disease.
How Is Sjogren's Neglected?
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If clinicians don’t know that Sjogren’s is COMMON, they don’t look for it.
This delays diagnosis for years, or even decades.
Rare diseases tend to get less attention.
This impacts research, resulting in fewer treatment options.
If clinicians don’t know that Sjogren’s is SERIOUS,
they may not be motivated to diagnose and treat the disease.
Because Sjogren’s medical education is inadequate,
some clinicians incorrectly tell patients that Sjogren’s is only a nuisance dryness disease.
If clinicians don’t know that Sjogren’s is SYSTEMIC,
comprehensive monitoring, prevention, and early intervention for non-sicca features
may not happen.
Sjogren’s Advocate helps you achieve more timely diagnosis
and better medical care.
Learn more ABOUT SELF-ADVOCACY, why you need to self-advocate, and how to advocate for the diagnosis and management of the systemic (non-sicca) manifestations of Sjogren’s.
Updated 03-21-2024