Updated 11-14-2023
Sjogren’s patients routinely encounter clinicians who know very little about their disease. When I teach PCPs, they are surprised to find out that Sjogren’s is a common, serious, multisystem disease. Even among rheumatologists, the disease often remains under the radar. A recent series of four blog posts about Sjogren’s neglect explains why the disease continues to be shortchanged by clinicians.
Nearly every week, patients post in online chat groups about the difficulty of getting good Sjogren’s care. Many are told that there are no treatments or that Sjogren’s does not need to be followed. Direct disease manifestations -- especially neuropathies, pain, and fatigue -- are routinely psychologized and dismissed. The persistence of incorrect ideas about Sjogren’s is astounding. Lack of clinician education harms patients.
The main goal of this website and blog is to provide self-advocacy tools. Much of this involves direct clinician education. Patients should not have to do the educating! Imagine a rheumatoid arthritis patient (similar prevalence to Sjogren’s) needing to provide Clinical Practice Guidelines or research articles to their doctors. It is extremely common for patients to hear: “Sjogren’s does not cause X,” even when the particular feature mentioned is a well-documented Sjogren’s manifestation. Right now, this is the reality that Sjogren’s patients face.
With an increasing shortage of rheumatologists, PCPs and others will need to step up to the plate. Through no fault of their own, most PCPs are unprepared to do this. Early diagnosis and treatment can reduce complications and progression. PCPs who learn about Sjogren’s can do a lot to help patients.
Core articles to share with PCPs who are unfamiliar with Sjogren's:
Editorial about the Patient Perspective by K. M. Hammitt of the Sjogren's Foundation.
Great introduction to the struggles patients face with Sjogren's care. Every rheumatologist, Sjogren's patient, and family member should read this! (Click on the orange box, "free to view" for the PDF.)
Sjogren's Foundation Living with Sjogren's 2021 Patient Survey (U.S.)
Documents loss of quality of life and function experienced by most patients. Because of Sjogren's, 42% have to reduce work hours, and 30% stop working altogether. Large percentages reported Sjogren's impacting their exercise, hobbies, social activities, and travel/ vacations. 36% report impact on activities of daily living.
See these pages for more tips and tools:
Handouts for Clinicians- How to choose and share them
