WHAT IS SJOGREN'S?

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Sjogren’s, or “Sjogren’s disease”, is a complex, serious, multisystem, inflammatory disease.  

Sjogren’s is a connective tissue disease, belonging to the same family of diseases that include rheumatoid arthritis and systemic lupus erythematosus.

Sjogren’s is always systemic, and never limited to sicca (dryness). It can impact every organ and system in the body.

Sjogren’s is an immune-mediated disease. It may be caused by the malfunction of multiple immune system pathways.  

Sjogren’s is often called an autoimmune disease because many patients have autoantibodies such as SS-A and SS-B. However, 30-40% do not have these autoantibodies.  

 

For a deeper dive, see the blog post, “So what is Sjogren’s, really?
 

Key Concepts

What Sjogren's is not

  • It 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. 
     

  • It 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.”
     

  • It 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. 
     

  • It is not secondary to another autoimmune/ connective tissue disease. Sjogren’s is Sjogren’s, whether or not it is associated with another major connective tissue disease.  See this blog post to learn why Sjogren's should not be called "secondary".
     

  • It is not rare. Sjogren’s a common disease but most patients remain undiagnosed. Sjogren’s impacts about 1% of the population. It is about as common as rheumatoid arthritis.

New to Sjogren's? Start here.

The Sjogren’s Foundation provides an excellent overview of the disease on their website. This, along with their Exploring Sjogren’s videos I and II, is a good place to start.

Sjogren’s Advocate takes a deeper dive into many topics, with an eye toward helping patients and primary care providers (PCPs) understand the process of diagnosis. It also reviews systemic manifestations, especially the ones that tend to be ignored and dismissed. PCPs and patients may use this information to advocate for comprehensive Sjogren’s care.   

Sjogren's Advocate will introduce you to many new concepts and terms. This blog post will help you understand how to read a Sjogren's Advocate page without getting lost

For a introduction to the immune system, check out the beautiful and brief video links in this blog post.

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Every clinician should know these basics - 

  Sjogren’s is common, serious, and always systemic.
 

  • If they don’t understand 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 they don’t understand 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 they don’t know that Sjogren’s is systemic, comprehensive monitoring, prevention, and early intervention for non-sicca features may not happen.

Because Sjogren’s is a neglected disease, Sjogren’s Advocate was created to help patients achieve more timely diagnosis and better care.  

Updated 11-30-2021