WELCOME TO SJOGREN'S ADVOCATE
Created by an MD with Sjogren's to help patients
achieve more timely diagnosis
and comprehensive care.
Sjogren's Advocate- a resource for patients and clinicians
paints a comprehensive picture of Sjogren's disease, with an emphasis on systemic manifestations. Systemic features are often overlooked even though they are found in nearly every patient who is carefully evaluated.
does not emphasize sicca (dryness),which is just one of many important features of Sjogren's. Most patients do find good sicca care, but many have trouble finding clinicians who are knowledgeable about systemic manifestations.
counters Sjogren's myths and misinformation with an accurate, up-to-date explanation about the serious, systemic nature of the disease.
offers practical tools and strategies for timely diagnosis. This allows for earlier treatment, which is more likely to be effective.
provides patients and primary care providers (PCPs) helpful ways to improve patient 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 United States, most rheumatologists look to the American College of Rheumatology (ACR) as their main source of clinical guidance.
Unfortunately, the ACR fails to publish and promote the Sjogren’s Clinical Practice Guidelines. Consistent with its lack of information about Sjogren's, 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 Sjogren's is always systemic, it should never be referred to as "sicca syndrome."
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Ignoring Sjogren’s and promoting outdated, incorrect information harms patients.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.
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.
As a patient with Sjogren's, you may feel overwhelmed by all of the new medical information and terminology. It is a lot to take in when you are feeling sick and vulnerable.
Pace yourself: read through pages or blog posts without clicking links or looking up vocabulary the first time through. Then go back and re-read the information, checking unfamiliar terms or links to help you understand the material.
How Sjogren's Advocate can help you
Learning as much as you can about the disease is key. This information will help you advocate for up-to-date Sjogren's care. Not all clinicians are familiar with the current understanding of Sjogren's as a serious multisystem disease. You may want to bring notes and carefully selected clinician handouts to your appointments. Printouts of journal articles (use the citations) for your rheumatologist or PCP may be used to help you discuss your concerns. Local and online support groups such as Smart Patients are good resources for referrals, practical tips, and emotional support.
PCPs are often interested in Sjogren's Advocate material. However, I don't generally recommend printing out Sjogren's Advocate pages or blog posts for rheumatologists unless they are familiar with and supportive of the website. They may not be receptive to information written by a non-rheumatologist. However, they are often receptive to journal articles from academic sources. The citations allow you to take in articles (or abstracts of articles) about the topics you read about on Sjogren's Advocate.
A WORD OF CAUTION
Some areas of Sjogren's Advocate discuss the disconnect between the needs of Sjogren's patients and typical Sjogren's care. Understanding why Sjogren's care often falls short is the first step to knowing how to advocate for comprehensive care.
Many patients find it validating to learn why so many clinicians are not engaged or up to date with Sjogren's. Sjogren's Advocate offers tools and strategies for achieving the best care possible.
However, if this topic feels overwhelming and upsetting to think about, you may want to limit yourself to the Sjogren's Foundation website for now.
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). They have usually been taught that it is just a nuisance dryness disease.
PCPs are often the first clinicians, along with eye doctors, that encounter early Sjogren's presentations. When Sjogren's is diagnosed early enough, it can make a big difference in outcome 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 because they are not taught about it during medical training.
I asked PCPs standard questions during each presentation. Here is what I found out:
Only one PCP (out of more than 200) had ever attended a Sjogren’s lecture.
The vast majority had no idea how Sjogren’s typically 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 an estimated10% 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 learned early on how to use the medical literature to improve my own care, especially when I had complications that my clinicians were not familiar with. I want other patients and PCPs to benefit from reliable scientific information without spending hours every week, like I do, learning about Sjogren’s.
I am passionate about helping other Sjogren’s patients because my personal experience has been so devastating. Like many, my diagnosis was long delayed despite being extremely ill. I still have to work hard to get the care I need. I am not always successful getting up-to-date care for common but neglected Sjogren's features such as dysautonomia. Most clinicians I encounter to this day remain unfamiliar with Sjogren's. This should not happen for such a common, serious, systemic disease.
My time and energy are greatly limited by daily fatigue and pain. I can no longer work, travel, or do many of the things I love to do. This restricts the amount of work I can do. Sjogren's Advocate is my way of creating meaning out of living with a disabling disease.
I would like to thank the many volunteers, especially Rebecca Lobo, who have helped me with design and editing. You have helped make this website so much nicer.