Promoting optimal care for Sjogren's, a common, serious, systemic disease.
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
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​Sjogren's Advocate is for undiagnosed & diagnosed adults with Sjogren’s,
their caregivers, & clinicians.
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This outdated "sicca syndrome", view of Sjogren's is a significant barrier to timely diagnosis and appropriate care.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 misperceptions 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.
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New to Sjogren's Advocate?
Pace yourself. You may feel overwhelmed by all the new medical information and terminology.
It is a lot to take in when you are feeling sick and vulnerable.
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Start by reading HOW TO USE SJOGREN'S ADVOCATE.
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NOTE: Please DO NOT email Sjogren's Advocate to ask for advice, opinions, feedback, practical tips, or referrals regarding personal medical care.
Smart Patients or local Sjogren's support groups can give you this kind of support.
Links to the main sections on Sjogren's Advocate
ABOUT SJOGREN’S
This section reviews the fundamental characteristics of Sjogren's disease.
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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.
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SELF-ADVOCACY
This section discusses the practical aspects of advocating for Sjogren's care, providing tools and strategies for working with clinicians.
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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.
A letter from Sarah Schafer,
MD and Sjogren's patient
I understand the struggle firsthand.
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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.
​PLEASE NOTE
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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.
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Sjogren's Advocate content is intended for patient education and support and may not be used for commercial purposes. You may copy and print material from Sjogren's Advocate for personal use.
Public sharing of Sjogren's Advocate content, e.g., in a blog, newsletter, or publication,
must attribute Sjogren's Advocate as the source.
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I would like to thank Bexi (Rebecca) Lobo, PhD for her professional design and editing help.
I am very grateful for the generous donations of Sjogren's Advocate readers
who've made a lot of her work possible. Thank you.
Updated 04-14-2024