Sjogren’s Syndrome Is Now Sjogren’s Disease: What It Means for You

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Sjogren’s Syndrome (SS) Is Now Sjogren’s Disease (SjD)

If you’ve been using the term Sjogren’s syndrome, it’s a great time to update your vocabulary—because as of June 2025, the condition is officially recognized as Sjogren’s disease (SjD). Here's what changed, why it’s meaningful, and how it empowers patients.

What’s Changed—And Who Decided It?

  • In June 2025, the 2023 International Rome Consensus on the Nomenclature of Sjögren’s Disease was formally published in Nature Reviews Rheumatology. This milestone marked the official renaming of Sjogren’s syndrome as Sjogren’s disease Sjögren’s Foundation+1MDNewsline.

  • The change was based on a rigorous international process involving:

    • A bibliometric analysis of medical literature,

    • A systematic literature review, and

    • A Delphi consensus approach incorporating feedback from 79 experts and 1,431 patients worldwide MDNewslinethelimbic.com.

  • The name change was initiated and strongly supported by the Sjogren’s Foundation—beginning with removing "syndrome" from their own name in Late 2019 and formally launching the international effort in 2022 Sjögren’s Foundation+1.

Why “Disease” Instead of “Syndrome”?

The switch isn't just semantics—it’s about respect, clarity, and validation.

  • The term “syndrome” often suggests a vague collection of symptoms, and patients reported that it made Sjogren’s feel less serious, more like a nuisance.

  • In contrast, “disease” emphasizes that Sjogren’s has a defined cause, systemic impact, and serious health implications. Patients described feeling more validated and understood when “disease” was used.

  • Experts echoed this—highlighting that Sjogren’s is an autoimmune disease with specific immunologic markers, tissue changes, and systemic effects, not just a loosely defined syndrome.

What About “Primary” and “Secondary”?

  • The term "secondary Sjogren’s"—used when Sjogren’s occurs alongside another autoimmune disease—has been removed from official use. It implied Sjogren’s was somehow less important.

  • Instead, the preferred term is “associated Sjogren’s” when multiple conditions coexist.

  • While “primary” vs. “associated” categories may still be helpful for research purposes, they’re no longer necessary in everyday clinical practice. It is often useful in research studies that all the participants have Sjogren's and no other autoimmune conditions that may affect the research.

What This Means for You—As a Patient, Advocate, or Caregiver

  1. Use the new term:

    • Say Sjogren’s disease, not syndrome.

    • Abbreviate it as SjD—a clear and unique shorthand that avoids confusion with the previously used “SS”.

  2. Correct others—gently:

    • Share the updated terminology with your healthcare team, family, and in support groups.

    • You might say: “The international community now officially calls it Sjogren’s disease to reflect its serious nature.”

  3. Celebrate what this change means:

    • It's a step toward greater recognition, better understanding among clinicians, and stronger advocacy for research and care.

  4. Stay informed:

    • Leading resources—like UpToDate, the American College of Rheumatology, major NIH programs, and electronic health record systems—are already using Sjogren’s disease but some long standing studies may not. Hopefully this will soon change.

Quick Facts for Easy Reference

FeatureOld TermNew Term
Official Name


  Sjogren’s syndrome
 (SS)

    Sjogren’s disease (SjD)


Term for overlap 


  Secondary  Sjogren’s


    Associated Sjogren’s


Abbreviation


  SS (confusing, many uses)


    SjD


Why it changed


  Minimizes impact


    Reflects seriousness and clarity


When finalized  June 2025    Consensus published in June 2025

In Summary

The shift to Sjogren’s disease (SjD) represents more than just a name—it reflects the systemic, autoimmune nature of the condition and honors the experiences of those living with it. This is a win for patient voice, medical clarity, and better care. From today on, you can be part of the change—adopt the new name, advocate for its use, and know that language can shape how your disease is understood and treated.

Sources

Sjogren’s Syndrome (SS) Is Now Sjogren’s Disease

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