SJOGREN'S ADVOCATE:
OUR MISSION
Key Concepts
Sjogren's Advocate:
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​Presents the realities of Sjogren’s (SHOW-grins) backed up by citations from up-to-date scientific sources
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Counters myths about Sjogren’s that get in the way of timely diagnosis & proper care
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Provides tools & strategies to advocate for necessary support & care
"'Medical schools have been very deficient in teaching people about recognizing Sjögren's disease.'
That leaves many physicians at a loss about
'what to do with these patients when they walk in the door,' said Mandel.
'They don't know how to manage them; they don't know how to diagnose them;
and they don't know how to treat them.'"
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Medscape, "New Clinical Guidance for Sjögren-Related Neuropathy", May 8, 2024
Sjogren's disease is frequently mischaracterized as a rare, mild, dryness (sicca) syndrome.
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This outdated "sicca syndrome", view of Sjogren's is a significant barrier to timely diagnosis and appropriate care.
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Many people with Sjogren's experience significant delays in diagnosis and suboptimal care that fails to address the systemic (non-sicca) aspects of the disease. ​​
The reality is that Sjogren's is a common, serious, systemic disease, never "just sicca". The evidence for this is undeniable.​
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Sjogren's impacts 3-4 million people in the US, and many more worldwide. In the US, a rare disease is defined as one that impacts fewer than 200,000 people.
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Sjogren's can affect every organ and system in the body. Almost every patient who is thoroughly evaluated will be found to have systemic (non-sicca) manifestations. Certain systemic manifestations of Sjogren's can be life-threatening.
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Fatigue, pain, and cognitive dysfunction ("brain fog") are core systemic disease features of Sjogren's that are often disregarded or misinterpreted, denying the reality of their devastating impact on daily activities, employment, and quality of life.
People with Sjogren's struggle to get adequate care because:
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most clinicians are not taught the reality of Sjogren's,
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there is no clear standard of practice and no guidelines for routine monitoring for the systemic manifestations of Sjogren's,
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systemic manifestations are often invisible, asymptomatic, or misattributed to other conditions,
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Sjogren’s care often stops with sicca, addressing systemic manifestations only after they become obvious and/or severe,
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myths and misconceptions about Sjogren's are widespread, including on otherwise reputable medical websites (e.g., Mayo Clinic and Cleveland Clinic), and
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there is little public awareness of the reality of Sjogren's.
Why don’t healthcare professionals know more about Sjogren’s?
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Sjogren’s neglect is a system-wide problem rather than a problem with individual clinicians.
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Sjogren’s is largely ignored by medical education programs, sending the message to clinicians that Sjogren’s is unimportant.
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What little is taught about Sjogren's often perpetuates myths and misperceptions about the disease.
What makes Sjogren’s Advocate unique?
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Sjogren’s Advocate addresses the gap between clinician knowledge and the reality of the disease head-on. It does not stop with messages to "talk to your doctor".
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Sjogren's Advocate acknowledges the difficulty of finding doctors who understand the complexities of Sjogren’s diagnosis and care.
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Sjogren’s Advocate walks you through how to find, choose, and share Sjogren’s information in a way that speaks to clinicians.
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Readers of Sjogren's Advocate can access source material through citations and other links.
Sjogren’s Advocate focuses on systemic manifestations, not sicca.
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Unlike sicca, systemic manifestations are routinely overlooked or misinterpreted, leaving patients vulnerable to accumulating damage. For example, lung and kidney damage can often be detected by screening tests long before symptoms emerge.
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​Good sicca care is widely available; the Sjogren’s Foundation has excellent information and resources.
Sjogren’s Advocate emphasizes the importance of monitoring every Sjogren’s patient for a wide variety of systemic (non-sicca) manifestations, regardless of SSA/SSB status or symptoms.
Updated 10-19-2025