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SELF-ADVOCACY
This section discusses practical aspects of Sjogren's care, providing tools and strategies for working with clinicians.
Sjogren's is a neglected disease. Even though Sjogren's is common and serious, patients often need to learn a lot about the disease in order to advocate for the care that they need. Sjogren's Advocate provides tools and strategies for patients and primary care providers (PCPs) tools to promote comprehensive care.
Newly Diagnosed
You just got diagnosed with Sjogren's. Where do you start? This page will help you get oriented to Sjogren's disease, including links to excellent introductory resources. You will also learn about the core health team that Sjogren's patients need, and what role each of them plays in your care.
Know Your Rheumatologist
Sjogren's rheumatology practice varies a lot. Not every rheumatologist is up to date on Sjogren's, especially when it comes to the systemic aspects of the disease. Rheumatologists should routinely monitor all Sjogren's patients for systemic manifestations, regardless of symptoms or serostatus (SS-A positive or negative). Sjogren's is never just a dryness disease.
The first step toward working effectively with your rheumatologist is to learn how they approach Sjogren's care. If they view Sjogren's as a nuisance sicca (dryness) disease, they are unlikely to provide comprehensive Sjogren's management. This page offers tips for how to diplomatically talk with your rheumatologist about the range of care that they offer.
Handouts for Clinicians
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How to find and choose reliable Sjogren's information to share with clinicians
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Know the core handouts to have on hand for appointments with rheumatologists, PCPs and other Sjogren's related care.
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Learn how to share handouts with clinicians using collaborative statements.
Updated 03-04-2023