Promoting optimal care for Sjogren's, a common, serious, systemic disease.
WEBSITES, VIDEOS, & BOOKS ABOUT SJOGREN'S
WEBSITES
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.
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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.
Beyond Dryness
Beyonddryness.com was started in 2023 by Harvard rheumatologist, Dr. Brandon Law. Patients and clinicians can subscribe for updates. His posts are a good resource for self-advocacy.
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.
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Academic Institutions
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.
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Johns Hopkins Rheumatology is the exception; their Sjogren's information is more balanced, detailed and up to date.
Use With Caution
Many seemingly reliable websites perpetuate outdated information and myths about Sjogren's and diagnosis.
Problematic websites for Sjogren's include, but are not limited to, the American College of Rheumatology (ACR), the Cleveland Clinic, Duke University, and the Mayo Clinic. These normally reliable websites fail to communicate the high burden of systemic disease, including the severe quality of life impact caused by fatigue, brain fog, and pain, which are systemic manifestations often misattributed to fibromyalgia or psychological disorders.
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The ACR website was recently updated, but continues to omit links to the Sjogren's Clinical Practice Guidelines. This is problematic because the ACR is the go-to place for US rheumatologists looking for practice guidance.
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Mayo Clinic Registry for Childhood Sjogren's - Contact Matthew Basiaga, DO, basiaga.matthew@mayo.edu. I do not recommend the Mayo Clinic website for Sjogren's information.
VIDEOS
Exploring Sjogren's by the Sjogren's Foundation
Videos 1 and 2 of the Season 1 series are a must-see for newly diagnosed patients and their friends and family. I highly recommend watching these.
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Exploring Sjogren's: Fatigue And Sjogren's
This video makes some important points, but fails to mention that abnormal autonomic nervous system control of heart rate and blood pressure (dysautonomia) often contributes to Sjogren's fatigue, brain fog, lightheadedness, and exercise intolerance. If you have dysautonomia that impacts your heart rate and blood pressure, that must be addressed in order to get much benefit from exercise. For details about how to exercise safely and successfully with Sjogren's fatigue, please see EXERCISE HELPS SJOGREN'S - HERE'S HOW TO DO IT SAFELY.
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What Is Sjogren's Syndrome? by Sue Masterson, PhD
This beautiful, 45-second video is useful for showing friends and family that Sjogren's disease is more than just dryness. They might be more inclined to watch this short introduction to Sjogren's rather than the longer, 10-minute video, "Exploring Sjogren's" above. The average viewer will not care if the phrase "Sjogren's syndrome" or the more modern phrase "Sjogren's disease" is used.
This video illustrates that an immune attack on epithelial cells causes damage in Sjogren's disease. Keep in mind that a 45-second video cannot capture the entire picture. Clinicians must always look out for systemic involvement, which can harm organs, nerves, and more when other cell types are attacked.
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Sjogren's Self-Care by Dr. Elizabeth Price (UK)
Reviews eye and oral care and explains the reasons behind the recommendations based on the disease process. Discusses the importance of fitness, with a few basic recommendations. Excellent Q and A, although I disagree with her statement that neuropathy is uncommon. Neuropathy, especially small fiber neuropathy, and autonomic disorders (DYSAUTONOMIA / POTS) are common but under-diagnosed. Go elsewhere to learn about POTS; in my opinion her comments about POTS were not very helpful.
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Small Fiber Neuropathy (SFN) by Dr. Ann Oaklander
Dr. Oaklander, a premier expert on this common condition in Sjogren's patients, explains SFN in this video.
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Fibromyalgia by Dr. Khosro Farhad
"Fibromyalgia" in Sjogren's may be caused by SFN. Dr. Farhad's video is short and explains why this is the case.
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A wonderful, practical, 30-minute video about dry eye disease.
Note: The presenter states that dry eye disease does not result in blindness, however, blindness is a rare but serious outcome that has been documented in severe cases of Sjogren's dry eye.
BOOKS
BOOKS FOR SELF-ADVOCACY lists three excellent books that are good references, although they may contain areas of contradictory information (e.g., Sjogren's prevalence, percentage with systemic manifestations) or fail to address core features of the disease (e.g., cognitive dysfunction, dysautonomia).
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Caution: These books are good resources, but readers will encounter occasional misinformation. Two of these books have multiple authors, each with their own perspective. While this is valuable for diverse viewpoints, experts contributing to Sjogren's textbooks sometimes contradict each other about some of the fundamental facts of the disease. It can be misleading when patients seek accurate information yet encounter MYTHS ABOUT SJOGREN'S or MYTHS ABOUT DIAGNOSIS that contradict current evidence.
Updated 02-23-2024