Sjogren's Disease Resources

Sjogren's Foundation

Start with the Sjogren’s Foundation for reliable, up-to-date information.


The patient education brochures and resource sheets are useful for specific disease topics, including symptom management. These are often helpful for clinician education and self-advocacy tools.

Be sure to check out the video library.

The Sjogren’s Clinical Practice Guidelines are important: Please share them with your clinicians. 
See the Printable Handouts for Clinicians page to learn effective strategies for choosing handouts and discussing Sjogren's information with clinicians. 
 

See this blog post to learn more about Sjogren’s lung disease.

Sjogren's Advocate (this website and blog) 

Sjogren's Advocate is an independent website, not part of the Sjogren's Foundation. This blog post shows how my work complements the Sjogren's Foundation's information.

 

Sjogren’s Advocate was created to help patients advocate for comprehensive care that goes beyond sicca (dryness) management. Self-advocacy is often necessary because many clinicians are not up to date. I focus on the systemic aspects of Sjogren's, especially the ones that tend to be overlooked.

It is important to choose handouts wisely, prepare them in advance, and have talking points ready. This page will help you choose, share, and discuss Sjogren's information effectively. 
 
Systemic Manifestations

See this page to learn why ongoing monitoring for systemic Sjogren's manifestations, regardless of antibody status or symptoms, is essential to good Sjogren's care. 
 

Comorbidities - Immune system

See this page for information about immune-mediated diseases that often accompany Sjogren's. 

The Crunchy Allergist

Dr. Kara Wada is an Allergist/ Immunologist, who, like me, is a doctor living with Sjogren's. I was delighted to find someone who offers lifestyle approaches that hit the spot: the right balance of scientifically minded and practical. 

While Dr. Wada covers some medical topics, especially those related to allergy and immunology, her passion is helping patients implement lifestyle measures that can support their health and help them feel better. Her blog posts and podcasts include topics such as diet, supplements, sleep, and stress. She explains what Sjogren's patients need to know about the immune system, allergies, and sensitivities. I am grateful to have this resource to complement my work on Sjogren's Advocate.

Find the links to all of  Dr. Wada's work on this PDF, 
including her website, The Crunchy Allergist

 

Academic websites

Academic medical centers usually include information about major rheumatologic diseases on their websites. Even though Sjogren's is a common, serious, systemic disease, it tends to be minimized or ignored. Sicca features typically dominate the description of Sjogren's on these websites. Systemic features are downplayed or sometimes left out altogether. Misleading content from prestigious medical centers reinforces clinicians' tendency to focus on sicca care, and little else. 

Johns Hopkins Rheumatology is the exception; their Sjogren's information is more balanced, detailed and up to date. Because Johns Hopkins is a Sjogren's research center, patients must usually meet the current version of the Sjogren's Classification Criteria to be diagnosed when they are seen there. Classification criteria are important for standardizing research populations but do not substitute for clinical judgement for diagnosis in the real-world setting. Patients who present with systemic (non-sicca) manifestations, especially neurological, often wait for years, or even decades, before they finally meet the classification criteria. 
See this section to learn more about Sjogren's diagnosis. 

Use with caution:
Problematic websites include the American College of Rheumatology (ACR), the Cleveland Clinic, Duke University, Mayo Clinic, and others. None of these websites captures the high burden of systemic disease or patient priorities such as fatigue, brain fog, and widespread pain. These direct Sjogren's features (not fibromyalgia) often have a profound impact on function and quality of life. 

 

The American College of Rheumatology website was recently updated, but they continue to omit links to the Sjogren's Clinical Practice Guidelines. This is problematic because the ACR is the go-to place for U. S. rheumatologists looking for practice guidance.

Updated 09-11-2022