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  • Presents the realities of Sjogren’s backed up by citations from up-to-date scientific sources

  • Counters myths about Sjogren’s that get in the way of timely diagnosis & proper care

  • Provides tools & strategies to advocate for necessary support & care

Sjogren's Advocate is for undiagnosed & diagnosed adults with Sjogren’s,

their caregivers, & clinicians.

https://take.supersurvey.com/Q550GXBG4

SJOGREN'S ADVOCATE

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Sjogren’s has a reality gap.

The ongoing mischaracterization of Sjogren’s as a mild sicca (dryness) disease
leads to lengthy delays in diagnosis and inadequate care.

The reality: Sjogren's is never "just sicca". 

  • The research evidence is clear: Sjogren’s is a common, serious, disabling and mostly invisible disease that can impact every organ and system in the body.

  • Certain systemic (non-sicca) manifestations can lead to early mortality. 

  • Fatigue, pain, and cognitive dysfunction (brain fog) are core systemic disease features that are often disregarded or misinterpreted; this denies the reality of their devastating impact on quality of life. 

People with Sjogren's struggle to get adequate care.

  • Sjogren’s care often stops with sicca, addressing systemic manifestations only after they become obvoius and/or severe. 

  • There are no guidelines for routine monitoring for systemic manifestations, leaving clinicians to decide on their own how to address systemic manifestations, if at all.  

  • Because there is no clear standard of practice, Sjogren’s care often does not reflect the serious systemic nature of the disease. 

Why don’t clinicians know more about Sjogren’s? 

  • Sjogren’s neglect is a system-wide problem rather than a problem with individual clinicians. 

  • Sjogren’s is largely ignored by medical education programs, sending the message that Sjogren’s is unimportant. 

  • What little is taught often perpetuates myths and misperceptions about the disease. 

What makes Sjogren’s Advocate unique? 

  • Sjogren’s Advocate addresses the gap between clinician knowledge and the reality of the disease head-on. Most websites tell you to “talk to your doctor”, without acknowledging that it is difficult to find doctors who understand the complexities of Sjogren’s diagnosis and care.  

  • Readers can access source material through citations and other links.

  • Sjogren’s Advocate walks you through how to find, choose, and share Sjogren’s information in a way that speaks to clinicians.  

Sjogren’s Advocate focuses on systemic manifestations, not sicca.

  • 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.

  • 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.

SUBSCRIBE to the Sjogren's Advocate mailing list for updates. 

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New to Sjogren's Advocate?

Start by reading HOW TO USE SJOGREN'S ADVOCATE.

Links to the main sections on Sjogren's Advocate

ABOUT SJOGREN’S

This section reviews the fundamental characteristics of Sjogren's disease.

DIAGNOSIS

At this time, there is no one test that rules Sjogren's in or out. This section explains why a big-picture approach should be taken when diagnosing Sjogren's in adults.

 

SJOGREN’S CARE

This section reviews various aspects of caring for Sjogren's care.

SELF-ADVOCACY

This section discusses the practical aspects of advocating for Sjogren's care, providing tools and strategies for working with clinicians.

RESOURCES

Because Sjogren’s can take a significant toll on your physical, mental, and emotional wellbeing, this section connects you to a wide variety of resources for support and self-advocacy.

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A note from Sarah Schafer, MD

and Sjogren's patient

 

I understand the struggle firsthand.

 

Like most people with Sjogren’s, I’ve faced dismissive comments and a lack of concern from my doctors about debilitating systemic symptoms even though I was too sick to continue my medical career or do most of the things I love to do.  

Even as an MD it has been challenging to find the care I need. The first two rheumatologists I consulted with would not diagnose me without the typical autoantibodies. I was finally able to get diagnosed after researching the medical literature and sharing information about SSA-negative Sjogren’s with my rheumatologist. More than two decades later, I am still using science-based articles and resources to discuss ongoing care with my doctors.

 

I created Sjogren’s Advocate to help people with Sjogren's find the care they need. I show them how to choose and share information with their clinicians. I translate medical jargon into plain language, equip them with the right questions to ask, and empower them to advocate for themselves with confidence.

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PLEASE NOTE

Sjogren’s Advocate is for educational purposes only and does NOT constitute medical advice.

Please DO NOT contact me to ask for individual advice or referrals.


Sjogren’s Advocate is an independent website and is not affiliated with the Sjogren’s Foundation

or any other institution.
Please DO NOT contact the Sjogren’s Foundation and ask them about Sjogren’s Advocate.

Updated 02-03-2024

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