Sjogren’s Syndrome has officially been renamed Sjogren’s Disease.
Also, it has been made official that the misleading term "secondary Sjogren’s" should no longer be used. These much-needed changes are a major achievement because they better reflect the serious, systemic nature of Sjogren’s, which is often incorrectly perceived by clinicians as 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: The Sjogren’s Foundation “Language matters!” blog post.
The official name change from Sjogren's Syndrome to Sjogren's Disease can be used to encourage clinicians, especially rheumatologists, to reconsider their approach to Sjogren's. By understanding the reason behind this name change, clinicians may be more likely to recognize the systemic nature of the disease and provide comprehensive care beyond sicca.
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, systemic manifestations are frequently overlooked.
Share the Sjogren’s Foundation blog post, "Language matters! The International Sjögren’s Community Changes Sjögren’s Syndrome to Sjögren’s Disease!" (electronically or in print) with your clinicians, on social media, and in your community.
Highlight these sentences from the blog post:
“The Sjögren’s Foundation is excited to announce that the international Sjögren’s community has officially changed the disease name from Sjögren’s syndrome to Sjögren’s disease to better indicate the serious and systemic nature of the disease. The term ‘secondary Sjögren’s’ meant to label that a patient has Sjögren’s plus another autoimmune disease, was also discarded and will be replaced with ‘associated’ to indicate the significance of both (or several) diseases in a patient’s overall health."
Tips for sharing the Sjogren’s Foundation blog post, “Language Matters” with your clinician(s)
For valuable information 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.
Many clinicians will be unaware of the official name change. Sharing the “Language Matters” blog post is a good way to open a discussion about your care in a low-key way, especially if you are not being monitored for systemic manifestations. To emphasize the weight and authority behind the name change, be sure to point out that this announcement comes from the Sjogren’s Foundation, a credible Sjogren’s resource and official institution.
Suggested statements to use with clinicians when sharing "Language Matters".
General:
“I thought you might be interested in this news from the Sjogren’s Foundation about the official name change 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.”
Raise awareness within your community. Share the Sjogren's Foundation blog post, "Language Matters", 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.
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