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 on the Sjogren's Foundation website.

The Sjogren’s Clinical Practice Guidelines are important; please share them with your clinicians.
See my HANDOUTS FOR CLINICIANS page to learn effective strategies for choosing handouts and discussing Sjogren's information with clinicians.

See WHAT YOU SHOULD KNOW ABOUT SJOGREN'S LUNG DISEASE for links to resources on Sjogren's lung disease.

Sjogren's Advocate (this website and blog)

Sjogren's Advocate is an independent website and is 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. The PRINTABLE HANDOUTS FOR CLINICIANS page will help you choose, share, and discuss Sjogren's information effectively.

Systemic Manifestations

See the USER GUIDE FOR HANDOUT: SJOGREN'S IS MORE THAN "JUST SICCA" 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 the IMMUNE SYSTEM COMORBIDITIES page for information about immune-mediated diseases that often accompany Sjogren's.

Comorbidities - Thyroid Disease Diagnosis and Management

See this excellent blog, Hormones Demystified, written by an endocrinologist. The emphasis is on thryroid disease but other topics are also addressed.

Videos

See the VIDEOS page for video resources on Sjogren's.

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.

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.

Resources By Organ And System

Sjogren's Lung Disease

This blog post links to lung disease resources including Clinical Practice Guidelines, self-advocacy tips.

Pulmonary Hypertension (PH) and Pulmonary Arterial Hypertension (PAH)
PAH is a version of PH that is more likely to be seen in Sjogren's. Once thought to be rare, the number of Sjogren's patients being diagnosed has increased in recent years. The main symptom is shortness of breath on exertion. Learn about PH vs PAH here.

Other PH / PAH Resources:

Pulmonary Hypertension Association - Good general information. The site states that Sjogren's is a rare disease, which is not true.

PAH Initiative
Links to pulmonary clinical practice guidelines here.

Neurological Manifestations

Johns Hopkins Rheumatology has an excellent handbook that reviews the neurological manifestations of Sjogren's.

Small fiber neuropathy and Sjogren's. Excellent, short review article.

Small fiber neuropathy articles A patient-friendly library created by a neuropathology company, Therapath.

Autonomic disorders
See AUTONOMIC DISORDERS / POTS, COULD YOU HAVE POTS? and DYSAUTONOMIA / POTS.