New Self-Advocacy Tool – It’s Sjogren’s Disease

Sjogren’s Syndrome has officially been renamed Sjogren’s Disease, and the terms "primary" and "secondary" Sjogren's should no longer be used.

These much-needed changes are a major Sjogren's Foundation achievement. The new terminology better reflect the serious systemic nature of Sjogren’s, and can help shift clinicians away from the longstanding myth that Sjogren's is a mild sicca (dryness) disease.

While these changes were initiated and led by the Sjogren’s Foundation, informed patients like you helped make them possible. Through Sjogren's Advocate, I have raised awareness about the negative impact of terms like "Sjogren's syndrome" and "secondary Sjogren's" since founding the site in 2018. My blog posts, such as "Words Matter" and "Sjogren's is Sjogren's; it is not secondary to any other disease you may have", explain how these inappropriate terms trivialize the disease and reinforce misconceptions that lead to inadequate care.  

By consistently addressing these issues on Sjogren's Advocate, I have helped educate patients about the harmful impact of misleading terminology on Sjogren's care. This empowered Sjogren's Advocate readers to provide crucial feedback that supported the Sjogren's Foundation's successful efforts advocate for more accurate terminology within the international Sjogren's community.

Learn more about how informed patients like you contributed to this important achievement by the Sjogren’s Foundation.

Self-Advocacy Tool:

NEW HANDOUT

The new Sjogren's Foundation flyer, "Sjogren’s Disease” is Formally Adopted by Global Consensus" provides an easy way to educate health care professionals and others that Sjogren's is a serious systemic disease, never "just sicca". When clinicians understand the reasons behind this name change, they are more likely to provide comprehensive care for the wide range of systemic problems caused by Sjogren's.

Sjogren’s care often falls short because sicca is overemphasized. Sjogren's is a multisystem disease, never limited to sicca. Every patient should be assessed for a wide range of features, not just dryness. Unfortunately, due to a lack of guidance for clinicians and deeply ingrained misconceptions about the disease, systemic manifestations are frequently overlooked.

SELF-ADVOCACY TIPS: 1. To learn mor about choosing and sharing Sjogren’s information with your clinician, self-advocacy please refer to the About Self-Advocacy page.  As always, use the “3 Ps” of self-advocacy: Prioritize, Prepare, Practice. 2. Scripts you can use to introduce the "Sjogren’s Disease” is Formally Adopted by Global Consensus" handout.

General

“I thought you might be interested in the news from the Sjogren’s Foundation. The name has officially changed from Sjogren’s Syndrome to Sjogren’s Disease to better reflect the serious systemic nature of the disease.” 

"Secondary Sjogren's". If you also have rheumatoid arthritis, lupus, or systemic sclerosis, you may want to add this statement:

“Sjogren’s experts have agreed to drop the term ‘secondary’ because Sjogren’s is a distinct disease that requires specific care.” For more self- advocacy tips, please read the July 24, 2025 Sjogren's Advocate email.

Raise awareness within your community.

Share the new  "Sjogren’s Disease” is Formally Adopted by Global Consensus" handout on social media, and in patient support groups to spark discussion and raise awareness.

Small actions of advocacy add up. There is strength in numbers. The more we advocate for ourselves with our clinicians, the more we increase Sjogren’s awareness in the medical community and beyond.

Sjogren's Advocate empowers you to advocate for yourself and the Sjogren's community in many ways.

One way is by highlighting valuable tools and resources from the Sjogren's Foundation, such as the announcement of the official name change to Sjogren's Disease.

Learn more about My Mission: To Be a Voice for People With Sjogren’s.