Promoting optimal care for Sjogren's, a common, serious, systemic disease.
SUPPORT & CLINICS
Community Support For Sjogren's
Join these groups to share ideas, information, and resources. Support groups can help you feel connected to the broader Sjogren's community.
Please remember that they do not substitute for medical advice. Use your own judgement when deciding what is useful to you.
Overall, I find the participants wise and generous. They inspire me to continue working on Sjogren's Advocate.
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Smart Patients (www.smartpatients.com/sjogrens)
This online community has large numbers of newly-diagnosed patients and more seasoned patients.
Most patients are based in the U.S. but three patients are members from elsewhere.
The main moderator, Robin, is not a Sjogren's patient, but has a deep understanding of chronic illness and experience with patient advocacy. She often posts links to pertinent articles and other resources on the site.
Robin has administered patient health groups online since 1997, first as a volunteer and now as the coordinator of the online communities at Smart Patients.
She says, "The Sjogren's community has been a joy ever since it started. It quickly became apparent patients were eager to share experiences and learn more about this condition which the medical community has neglected for so long."
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Free membership is required to join the community and its private discussions.
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SSL Email Listserv (http://www.dry.org/ssl.html)
A long-standing email listserv for the discussion of and resources for Sjogren's.
Created by David Dryden, a Sjogren's patient.
Local Support Groups: In-Person And Online
These can be particularly useful for local referrals and resources.
For more information, contact the Sjogren's Foundation or see https://www.sjogrens.org/home/get-connected/support-groups.
Sjogren's Clinics
There are only a few Sjogren's specialty clinics in the US. Most patients will need to work with local clinicians for ongoing care. The clinics listed below sometimes, but not always, provide ongoing care. They may be helpful for consultation if you are having trouble getting diagnosed or establishing a treatment plan. ​Caution: Some clinics and rheumatologists that claim to specialize in Sjogren's do not provide up-to-date care.
UC Berkeley Sjogren's Center (Located At The Eye Clinic)
A multi-specialty approach to the diagnosis and management of Sjogren's by an expert team:
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Dr. Nancy Carteron, Rheumatology
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Dr. Ava Wu, Dental / Oral
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Dr. Nancy McNamara, Optometry / Dry Eye Disease
This clinic provides consultation or second opinions for the patient's treatment team.
Other dry eye disease and/or ongoing management of Sjogren's disease is not available.
Johns Hopkins Sjogren's Center
Provides diagnosis, consultation and in some cases, ongoing care for Sjogren's disease.
Because Johns Hopkins is a Sjogren's research center, patients who don't meet the current version of the Sjogren's CLASSIFICATION CRITERIA may not be eligible for ongoing care, but may be offered an evaluation or a second opinion.
Reminder: Classification criteria are important for standardizing research populations but do not substitute for clinical judgement for diagnosis. Patients who present with systemic (non-sicca) manifestations, especially neurological, often wait for years before they finally meet the classification criteria for Sjogren's.
The SJOGREN'S DIAGNOSIS section discusses diagnosis of Sjogren's in detail.
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Penn Medicine Sjogren's Syndrome Center
Please ignore the homepage information which states, incorrectly, that 25% of patients have systemic manifestations. Systemic (non-dryness) features are found in almost every patient who receives a comprehensive evaluation.
Dr. Chad Johr leads this program and is knowledgeable about Sjogren's. It is unclear if this program follows patients who do not meet the Sjogren's Classification Criteria.
Sjogren's Clinical Trials
Clinical Trials For Sjogren's
Learn more about how you can participate in clinical trials testing potential treatments for Sjogren's.
Disability And Social Services Help (U.S. Only)
How To Get On
While this blog is written for ME/CFS patients, it is also helpful for people living with Sjogren's.
Workplace Accommodations
Written for DYSAUTONOMIA patients, but much of it applies to Sjogren's because many Sjogren's patients have dysautonomia and it is often undiagnosed.
Updated 02-23-2024