The American College of Rheumatology, Sjogren’s Disease Experts,
 and Medical Educators Need to Step Up

April is Sjogren’s Disease Awareness Month.

People with Sjogren's live with a high burden of disease; on average their quality of life and function are worse than that of people with rheumatoid arthritis (RA) or systemic lupus erythematosus (lupus). A recent Nature scientific report on the Health-Related Quality of Life (HRQoL) in Sjogren’s patients living in Taiwan states that, “Many report fatigue and pain, irrespective of the organ affected, leading to a notably diminished HRQoL, sometimes equated to conditions worse than death.” 

In Taiwan, Sjogren’s disease is, “recognized as one of 31 catastrophic illnesses” and allows “officially registered patients to be absolved from medical copayments”. 

What is Sjogren’s Disease?

Sjogren’s is a serious, complex, largely invisible, and highly unpredictable autoimmune rheumatic disease that can affect anyone at any age. 

Sjogren’s disease affects more than just the moisture-producing glands in your body. Sjogren’s disease is always systemic; it can affect any part of the body, especially nerves, organs, and joints, sometimes without producing obvious symptoms.  The only way to detect this silent damage is by monitoring for a wide range of ways Sjogren’s can impact your organs and systems (systemic manifestations). Early detection of Sjogren’s systemic manifestations allows for timely intervention, when treatments are most likely to be effective and can lessen the burden of Sjogren’s and its impact on mortality and quality of life. 

Sjogren’s disease is not rare, just rarely diagnosed because it’s misunderstood and neglected.

Sjogren’s disease is as common as RA and 3 times as common as lupus; it affects 4 million people in the US.  Yet, doctors and the public know more about RA and lupus than they do about Sjogren’s.      

Myths and misconceptions about Sjogren’s are entrenched in research and medical education and incorrectly portray Sjogren’s as a rare, mild dryness syndrome that mainly affects middle-aged women.  This mischaracterization of Sjogren’s harms patients because it hinders diagnosis and proper care.  It’s criminal.  And, given that 9 out of 10 people diagnosed with Sjogren’s disease are women, it’s misogynistic, too.

Inadequate medical education is the main reason that Sjogren’s disease is misunderstood and neglected.  As described by George Sarka, MD, and Steven Mandel, MD, members of the Sjogren's Foundation Peripheral Nervous System Guidelines Topic Review Group in 2024, ”’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,'...'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.”

As a result, doctors frequently mistake Sjogren’s for fibromyalgia, irritable bowel syndrome, anxiety, depression, or functional neurological disorder.

Sjogren’s institutions place an unfair burden on patients by asking them to educate their doctors.

“If you feel your Sjögren’s symptoms are dismissed by a physician, help educate your physician and/or find another physician” is a survival tip from the Sjogren’s Foundation.  In the doctor-patient relationship, the doctor has more power.  Why should patients be put in the vulnerable position of needing to educate their doctor on Sjogren’s? (Or anything, really.)

Inconsistent messages about Sjogren’s on go-to websites for doctors and patients lead to confusion.

Sjogren’s is a well-characterized autoimmune rheumatic disease, not a vague syndrome.  Referring to Sjogren’s as a “syndrome” trivializes its often life-altering impact.

Last year, to communicate the serious and systemic nature of Sjogren’s, the Sjogren’s Foundation, whose mission is to, “Serve as the voice for all Sjögren’s patients through advocacy and awareness initiatives”, successfully got the name changed from “Sjogren’s Syndrome” to “Sjogren’s Disease”.  The Sjogren’s Foundation alerted patients of the change more than 6 months ago. Yet, as of publication of this article, the pages on Sjogren’s published by Cleveland Clinic, Mayo Clinic, and Harvard, still refer to Sjogren’s as a “syndrome” and perpetuate many other myths and misconceptions.

The American College of Rheumatology (ACR) is the official organization for rheumatologists, the specialists responsible for treating Sjogren’s disease, but they don’t provide up-to-date, accurate information about Sjogren's.  When it comes to Sjogren’s, the ACR doesn’t fulfill its mission, “To empower rheumatology professionals to excel in their specialty."  Rheumatologists access clinical practice guidelines (CPGs), disease-specific recommendations for managing rheumatic diseases such as Sjogren’s, via the ACR website. Though the site lists CPGs for most of the common rheumatic diseases, including RA and lupus, it does not list the Sjogren’s CPGs published by the Sjogren’s Foundation. How can rheumatologists provide up-to-date Sjogren’s care, let alone excel at it, if the ACR doesn’t provide them with current information about, and CPGs for, Sjogren’s?    

To make matters worse, the Sjogren’s section of the ACR’s website, Rheumatology for Primary Care, gives doctors outdated, inaccurate information about Sjogren’s, reinforcing myths and misconceptions that continue to be major barriers to diagnosis.  More than six months ago, when the Sjogren’s Foundation excitedly informed patients of the name change, they reported that, “The term ‘secondary Sjögren’s’ was also discarded."  “Secondary Sjogren’s” has long been used to describe Sjogren’s that occurs together with another autoimmune rheumatic disease such as RA or lupus.  It’s used to downplay Sjogren’s and is another barrier to care.  

Yet, despite the consensus of the international Sjogren’s community to drop “secondary”, as of this article’s publication, the Clinical Presentation section of Sjogren’s on Rheumatology For Primary Care still states, “Sjogren’s can present as a primary disease called Sjogren’s disease, in the absence of another underlying disease, or a patient can have secondary Sjogren’s.”

Worldwide, Sjogren’s patients are neglected and misunderstood, but we’ve stepped up to support each other in many ways and our community is stronger because of it. To this end, I founded the Hidden Illness & Disability Directory of Entrepreneurs & Nurturers, HIDDEN, to make it easy to find them.  Here are just some of the people living with Sjogren’s and serving our community that you’ll find on HIDDEN: Kara Wada, MD, a holistic allergy and immunology physician, Cristina Montoya, RD, a registered dietitian, Susan Masterson, PsyD, author of the “Anxiety Relief” coloring book, Desiree Werland, host of the “Stronger Than Autoimmune” podcast, and, most important, Sarah Schafer, MD, founder of Sjogren’s Advocate.

Dr. Schafer is a courageous, ethical, persevering, and compassionate doctor who, despite her own severe disease, is constantly advocating for people with Sjogren’s.  She uses her research skills, medical background, and connections within the patient and rheumatology communities to advocate for institutional change and to help people with Sjogren’s navigate the difficulties of obtaining diagnosis and proper care. 

She’s volunteered as a patient representative on the Sjogren’s Foundation consensus panel for three sets of Sjogren’s Clinical Practice Guidelines and taught over 200 primary care clinicians how to recognize and diagnose Sjogren’s, a subject on which they’d received little formal training.  Concerned by the continued lack of up-to-date Sjogren’s education for clinicians, and finding rheumatology organizations doing little to improve it, she established Sjogren’s Advocate in 2018 to equip patients with the information and tools for self-advocacy.  And last summer she notified the Sjogren’s Foundation and the ACR of the mischaracterizations and multiple inaccuracies about Sjogren’s on Rheumatology for Primary Care.  She keeps the community updated on the progress she’s making advocating for institutional change.   

On www.sjogrensadvocate.com, Dr. Schafer empowers patients with science-based information (meticulously gathered, synthesized, and cited), medical language, and strategies necessary for advocating for better care.  In 2019, I started volunteering to help edit, design, and build Sjogren’s Advocate because I realized that the vital information Dr. Schafer shares was not available anywhere else.  In my case, it saved my life. 

When Sjogren’s Advocate required more of my time than I could volunteer, the global Sjogren’s patient community’s belief in Dr. Schafer’s vision and their trust and confidence in her, led them to generously fund my work, enabling us to expand the accessibility and reach of Sjogren’s Advocate.  Dr. Schafer and what she’s published on Sjogren’s Advocate have been invaluable in shaping my understanding of Sjogren’s.  Her mentorship has encouraged, equipped, and empowered me to be able to speak the truth about Sjogren’s.

This Sjogren’s Awareness Month, as we continue to advocate for the reality of Sjogren’s, I’d like to thank Dr. Schafer and all the Sjogren’s patients who’ve created community for us by sharing, supporting, and collaborating with each other.  Please join us.