Framing the key Importance of Systemic
In relation to Sjogren's
Framing the Key Importance of Systemic
In relation to Sjogren's
This section, specifically the Always Systemic page makes a clear case, backed by research, that Sjogren’s is undeniably a systemic disease.
Below highlights the importance to Sjogren's patient & is an introduction to the section
Rheumatology practice often does not reflect this fundamental fact. Sjogren’s is never “just a sicca disease.” In addition to the management of sicca disease (which does not occur in 100 %), every Sjogren’s patient deserves to be monitored for systemic complications and comorbidities, and treated accordingly.
Definition: Systemic means affecting the entire body, rather than a single organ or body part. For example, systemic disorders, such as high blood pressure, or systemic diseases, such as the flu, affect the entire body.
THE THREE CATEGORIES OF SYSTEMIC MANIFESTATIONS
Dividing systemic manifestations into three categories provides a framework for discussing comprehensive care with clinicians. Please take the time to read about these categories as described on the Sjogren’s is Always Systemic page.
When a patient is told by a clinician that they just have sicca disease, this implies that they have no systemic manifestations. Patients can ask their clinicians to clarify how they define systemic involvement.
For example, is the clinician referring to just the one category, such as the *ESSDAI (Category 1) features? When this occurs, the two remaining categories of systemic features tend to be overlooked. Even when systemic is strictly defined by the *ESSDAI, a large majority of patients reveal at least one *ESSDAI feature- if they receive a full evaluation.
Using the *ESSDAI to define systemic disease is problematic for many reasons, as described 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.
It can be hard for patients, or even clinicians, to wrap their minds around the dozens of systemic manifestations that can occur in Sjogren’s. 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 subset experience life-threatening complications. Most patients fall somewhere in between.
The Sjogren’s is Always Systemic page is extensively researched and cited. Readers are encouraged to return to this page to review concepts and to access the source materials.
Don’t be daunted! These terms may be new to many readers, but are carefully explained. When patients understand how clinicians and researchers define systemic disease, they can better advocate for comprehensive care.
* “ESSDAI” is the abbreviation for the EULAR Sjogrens syndrome disease activity index. This is covered in the Sjogren’s is Always Systemic page.