More to follow!
More to follow!
Exploring Sjogren's Videos, Sjogren's Foundation
Highly recommended. Videos one and two of the Season One series are a must see for newly diagnosed patients and their friends and family.
Understanding that Sjogren's is a multisystemic disease
is the key foundation for comprehensive care.
SJOGREN'S IS SYSTEMIC
This section, specifically the Sjogren's is Always Systemic page, makes a clear case, backed by research, that Sjogren’s is undeniably a systemic disease.
Rheumatology practice often does not reflect this fundamental fact: Sjogren's is never "just a sicca disease."
Learning about the three categories of systemic manifestations, as well as comorbidities, can help patients communicate clearly with clinicians about what optimal care looks like for them. Please take the time to read about these categories as described on the Sjogren’s is Always Systemic page.
Each patient has their own unique set of features. Some Sjogren’s patients experience a fairly mild course of disease with just a few manageable systemic manifestations. A significant minority experience life-threatening complications. Most patients fall somewhere in between.
Systemic means affecting the entire body, rather than a single organ or body part.
In Sjogren's, systemic manifestations are the features not caused by sicca/ dryness.
However, rheumatologists often use this term inconsistently, as explained on the Always Systemic page.
Using this section to communicate with clinicians
When a patient is told by a clinician that they just have sicca disease, this implies that they have no systemic manifestations. The patient can then ask their clinician to clarify how they define systemic Sjogrens, using the categories described in the Always Systemic page as a guide.
Most patients experience at least one feature in each of the three categories of systemic disease. Yet many rheumatologists tell their patients that Sjogren’s is mainly a sicca disease. A number of systemic manifestations tend to be overlooked or discounted. Some serious manifestations, such as lung disease, may be present without obvious symptoms. This is all spelled out on the Sjogren’s is Always Systemic page.
Because the majority of patients experience at least one feature in each of the three categories of systemic disease, it defies logic that many rheumatologists and some rheumatology organizations still promote the view that many or most Sjogren’s patients have “sicca-limited” disease.
The Takeaway
The content contained in the Sjogren’s is Always Systemic page is fundamental to every aspect of Sjogren’s care. It is backed by extensive research.
Readers are encouraged to return to this page to review concepts and to access the source material from the citations.
Don’t be daunted! Some of the terms may be new to readers, but they are carefully explained. When patients understand how clinicians and researchers define systemic disease, they can better advocate for comprehensive care.
The table below contains links to all of the Systemic sections.
This is the key section. Please begin here!
"Classic" extraglandular manifestations mainly used in research
Distinct systemic features, often overlooked
Common systemic features such as flu-like fatigue and malaise
Associated systemic diseases and conditions
Updated 12-17-2020