Created by an MD-patient to help patients
achieve more timely diagnosis
and comprehensive care.
provides practical tools and strategies for timely diagnosis and comprehensive care,
highlights common systemic (non-sicca) manifestations, especially those that tend to be overlooked or dismissed,
reveals the disconnect between the reality of Sjogren’s disease and actual patient care and offers patients and PCPs helpful ideas to respond to this, and
counters Sjogren’s myths and misinformation.
Why I created Sjogren’s Advocate
Like most Sjogren’s patients, I had a very hard time getting diagnosed, despite having classic symptoms. This should not happen for such a common, serious, systemic disease. Over the years, it has become clear to me that most clinicians, including many rheumatologists, are not up to date or even interested in Sjogren’s. I created this website to help other patients and PCPs advocate for better Sjogren’s care.
A lot can be done to help Sjogren's patients. Treatment can reduce progression and complications as well as address pain, fatigue, and other important quality of life issues.
Clinical Practice Guidelines are now available. Clinicians need to use them! Until Sjogren's medical education becomes a priority, patients will continue to receive suboptimal care.
Why do Sjogren's patients have such a hard time getting good care?
Rheumatologists are the specialists who are supposed to take the lead in Sjogren’s management. In the U.S., most rheumatologists look to the American College of Rheumatology (ACR) as their main source of clinical guidance. Other clinicians look to rheumatologists for guidance about Sjogren's and closely related diseases such as rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE). If rheumatologists are not up to date with Sjogren's, this impacts every PCP and specialist.
Unlike RA and SLE, the ACR does very little to promote Sjogren's education for rheumatologists. The ACR fails to publish and promote the Sjogren’s Clinical Practice Guidelines. ACR conferences and continuing medical education programs repeatedly fail to highlight Sjogren’s, or they leave it out altogether. To make matters worse, the ACR
website incorrectly portrays Sjogren’s as mainly being a mild sicca disease, despite clear evidence that it is a serious multisystem disease.
Because the ACR neglects Sjogren’s, rheumatologists don't always learn how to properly diagnose and manage the disease. Patients often go through multiple rheumatologists before they find one who can provide comprehensive care.
Ignoring Sjogren’s and promoting outdated, incorrect information harms patients.
Many patients are diagnosed late, typically after the disease has far progressed.
Too often, they are dismissed, psychologized, and told incorrect information. Many are denied appropriate monitoring, treatment, and referrals even after diagnosis.
How Sjogren's Advocate helps patients and PCPs
I learned early on how to use the medical literature to improve my own care, especially when I experienced complications with which my clinicians were not familiar. I want other patients and PCPs to benefit from reliable scientific information without spending hours every week, like I do, learning about Sjogren’s.
Sjogren’s Advocate focuses on what is missing in Sjogren’s care, especially systemic manifestations that tend to be overlooked. I don’t focus on sicca because there are many excellent resources for this topic. I encourage patients and PCPs seeking information to start with the Sjogren’s Foundation website and then use this website, Sjogren’s Advocate, for a deeper dive into specific topics and practical self-advocacy tools.
Sjogren's Advocate is for education and information purposes only.
It does not substitute for medical diagnosis and treatment.
Sjogren's Advocate is not part of the Sjogren's Foundation.
Please be sure to read the disclaimer page for important details.
This website should not be necessary. You should be able to count on your clinicians to be knowledgeable about Sjogren’s. Unfortunately, this is often not the case.
Despite my medical background and having an excellent rheumatologist, I also struggle to find doctors who can help me manage a number of systemic complications.
It can be overwhelming to learn a lot of new medical information and terminology when you are feeling sick and vulnerable. Pace yourself: go back and re-read sections that seem hard to understand at first. Learning what comprehensive Sjogren’s management should look like will help you advocate for the best care available to you. Local and online support groups such as Smart Patients can provide help, feedback, and emotional support.
You may find yourself in the awkward place of knowing more about Sjogren’s than your non-rheumatology clinicians do. Even rheumatologists sometimes overlook important disease features. Carefully selected clinician handouts and journal articles (use the citations) can be helpful. I don’t generally recommend printing pages from Sjogren’s Advocate to share. While some clinicians welcome this, others may not be receptive to information written by a non-rheumatologist.
CAUTION! Some blog posts provide analysis and commentary about why Sjogren’s is so neglected. Many patients find this validating and helpful. However, if this feels too upsetting and stressful to think about, you may want to limit yourself to core medical information for now. The main webpages mostly contain factual medical information. The blog posts feature a mix of opinion pieces and short medical topics.
As much as I would like to answer questions about your individual situation,
I cannot and will not offer individual medical advice or substitute in any way for direct care.
However, I welcome general questions and comments from patients
If you see adult patients, you are seeing Sjogren’s patients, mostly undiagnosed.(15) Sjogren’s is a serious disease, with significant morbidity. Many PCPs who attend my lectures are shocked to learn that Sjogren’s can actually kill you. (24) PCPs are often the first to see early Sjogren's presentations, and if you recognize and diagnose the patient early enough, you can make a big difference in outcomes and quality of life.
Sjogren’s Advocate will help you learn to recognize Sjogren’s and take the first steps to diagnosis. Most patients experience years, and sometimes decades, of disease progression before they finally get care. Sjogren’s Advocate makes it easy for you to take action. It also explains your important role in the Sjogren’s health care team.
Sjogren's is common, serious and always systemic:
it should be a front burner diagnosis!
What PCPs are taught about Sjogren's
My experience teaching PCPs over the past decade reveals that most remain unfamiliar with Sjogren's, through no fault of their own.
I ask PCPs standard questions during each presentation. Here is what I found out:
Only 1 PCP (out of more than 200) had ever attended a Sjogren’s lecture.
The vast majority had no idea how Sjogren’s presents or how it is diagnosed. Not one PCP had ever suspected Sjogren’s in a patient or initiated diagnostic tests or referrals.
Most thought that Sjogren’s is rare. Sjogren’s is about as common as rheumatoid arthritis (RA), impacting about 1% of the U.S. population, mostly women (1). Sjogren’s is just as important as RA to diagnose and treat.
None of them seemed aware that Sjogren’s is always systemic. Only a few could name even one non-sicca feature.
They were generally unaware that 10% of patients die from direct Sjogren’s complications (24) such as lung disease or lymphoma, or that comorbidities also increase morbidity and mortality. (42, 61) This got their attention!
Sjogren’s is not rare, just rarely diagnosed!
I welcome comments, questions and feedback.
A personal note…
I am passionate about helping other Sjogren’s patients because my personal experience has been so devastating. I am no longer able to work, travel, or do many of the things I love to do. I am frustrated by the continual need to educate so many clinicians, especially non-rheumatology specialists. This should not be my job, or the job of any patient.
My time and energy are greatly limited by daily fatigue and pain. This restricts the amount of work I can do. For example, I can no longer provide in-person teaching sessions with PCPs; even a one hour presentation is enough to trigger a serious illness flare. This is why many sections remain under development.
A big thank you!
This website is only made possible because of the volunteers who help me write, edit, and design this website. A special shout out to Rebecca Lobo and my "design guru" who wishes to remain anonymous. I’m very grateful for your time and effort. You have helped make this website happen!