About Sjogrens Advocate

Helping patients and clinicians achieve timely diagnosis and comprehensive care

For Sjogren's patients    

Sjogren’s is a complex multi-system disease. Even though it is common, most doctors remain unfamiliar with important systemic features. Diagnosis is usually the first major hurdle that patients face. Sjogren’s patients are typically “missed and dismissed” for years.
 

Sjogren’s Advocate addresses common patient questions, such as:   
 

  • Why do doctors sometimes disagree on how to diagnose Sjogren’s?

  • Can I have Sjogren’s if my lab tests are normal?

  • Why do my doctors think that Sjogren’s is a mild disease, all about dryness? What about fatigue, pain, brain fog, or organ disease?

  • How do I know if I will get serious complications?

  • Who should be on my health care team?

  • How do I make decisions about treatments?

For Clinicians

Opening doors and minds to Sjogren's

If you are seeing women in your practice, you are seeing Sjogren’s patients. It is that common! While men and children do get Sjogren’s, 90% of patients are adult women. Many remain undiagnosed.Their symptoms are often blamed on menopause, fibromyalgia, or depression.
 

One of the most common complaints I hear from other patients is “Why doesn’t my doctor know about Sjogren’s?”  Sadly, medical education programs rarely teach the following key facts:   

Key Sjogren's Facts

 

  1. Sjogren’s is common, affecting approximately 1 % of adults in the U.S. (1)

  2. Quality of life is often greatly compromised in Sjogren’s patients.

  3. Sjogren’s is always systemic.

  4. Sjogren’s is serious. Direct complications include organ system involvement and lymphoma.

  5. Sjogren’s patients are at increased risk for a number of comorbidities, including heart disease, stroke, infection and osteoporosis.

 

I know from teaching PCPs that most are unaware of these five key facts.  In my experience, they have not been taught how to recognize Sjogren’s or take the first steps to diagnosis.  Yet early diagnosis and treatment are essential to prevent progression, reduce complications, and improve quality of life.
 

Each Sjogren’s patient is unique. While some patients experience a sudden or severe onset, the more typical presentation is a slow progression of seemingly vague complaints such as disabling fatigue, malaise, and/or widespread muscle and joint pain. Patients often fail to mention sicca (dryness) symptoms in the primary care setting.  About 20 % do not have sicca symptoms at the time of presentation. Labs may be normal. Sjogren’s patients tend to look well even when they are seriously ill. These factors, along with lack of clinician familiarity with the disease, contribute to delayed diagnosis.

PCPs Steps to Diagnosis walks clinicians through common presentations and red flags. This page suggests a framework for initial evaluation. This material was adapted from my presentation content, which was developed in consultation with several expert rheumatologists.  

 

What makes this website and blog unique?
 

Sjogrens Advocate is a completely independent website, focusing on specific tools and strategies for diagnosis and care. Patients need resources to know if they are getting up-to-date care. They are often told incorrect information such as “You can’t have Sjogren’s because your SS-A is negative” or “Sjogren’s is not serious- just a nuisance dryness disease.” This website explains why these statements are incorrect, providing citations, key articles, and other materials that can be shared with clinicians. My aim is to complement, not replace, the excellent information provided by the Sjogren's Foundation. For more information about the unique advocacy provided by this website, see my blog post: The real reason for Sjogren's Advocate.
 

Sarah Schafer, MD and Sjogren’s Patient 

Please read the disclaimer page- this website and blog are not intended as a substitute for individual medical advice, tests, or treatments. The content of this website is to be used for general information only.

Updated 5-25-20