For Sjogren's patients
Sjogrens Advocate was created to help you get timely, comprehensive care. Sjogren’s is a complex but common disease that most doctors know little about. Diagnosis is usually the first major hurdle that patients face. Sjogren’s patients are typically “missed and dismissed” for years.
Sjogren’s Advocate will address 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?
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 basics:
Key Sjogren's Facts
Sjogren’s is common, affecting approximately 1 % of adults in the U.S. (1)
Quality of life is often greatly compromised in Sjogren’s patients.
Sjogren’s is always systemic.
Sjogren’s is serious. Direct complications include organ system involvement and lymphoma.
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 in the primary care setting. 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.
What makes this website and blog unique?
Sjogren’s Advocate focuses on specific tools and strategies aimed at both patients and PCPs. Patients need resources: they are all too often given 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, and gives specific citations that patients can share with providers.
PCPs Steps to Diagnosis walks clinicians through common presentations and red flags, and suggests a framework for initial evaluation. This material is adapted from my presentation content, which was developed in consultation with several expert rheumatologists.
Sarah Schafer, MD and Sjogren’s Patient
The content of this website and blog is my sole responsibility. It is to be used for general information only and is not intended for individual medical advice. My objective is to complement, not replace, the wide range of excellent, up-to-date information provided by the Sjogren’s Syndrome Foundation (SSF), at www.sjogrens.org
The practical information contained in this website is not an “official” guideline approved by the SSF or any medical board or rheumatology organization. In an ideal world, a website like this should not be needed. Medical schools and residency programs would provide training commensurate with such a common and serious disease. Clinicians should use their best judgement, taking into account each patient’s needs as well as the medical system that they work in.