The Backstory. Why the Sjogren's Is More Than "Just Sicca" handout is key
Updated: May 8, 2022
The Sjogren’s Is More Than “Just Sicca” handout was two years in the making. I think that I finally landed in the “Goldilocks” spot- not too much and not too little- thanks to the editing and design help from Rebecca Lobo.
What does the Sjogren’s is Never “Just Sicca” handout do?
This clinician handout makes an airtight case, based on scientific evidence, that Sjogren’s is serious and always systemic. This is the single most important thing that clinicians need to know about Sjogren’s. The Sjogren’s Is More Than “Just Sicca” handout will help you advocate for comprehensive care that goes beyond sicca (dryness). Sjogren’s patients often find it helpful to have clinician education tools to share with clinicians are unfamiliar with the systemic aspects of the disease.
Why is a handout like this needed?
I cannot think of another common, well-characterized* disease that is so misunderstood. The misperception that Sjogren’s is a mild sicca-limited disease remains widespread. This is a major reason that Sjogren's care tends to be suboptimal. Sjogren’s is often treated as unimportant even though it is a serious, systemic disease, just like rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE). Sjogren’s, RA, and SLE belong to the same family of diseases, called autoimmune rheumatic diseases (AIRDs). RA and SLE patients usually do not have difficulty finding clinicians who know how to care for their disease. In contrast, Sjogren's patients often try multiple rheumatologists before they find one who provides up-to-date Sjogren’s care. This is not because Sjogren’s is rare; it is about as common as RA and far more common than SLE. Because clinicians often think of Sjogren's as a nuisance sicca disease, most patients remain undiagnosed. As one patient lamented, “I just want to find a doctor who thinks Sjogren’s is real!”
Clinicians often label Sjogren’s patients with “health anxiety” or functional disorders, especially when they complain of disabling fatigue, brain fog, or widespread pain. These are common, direct features of Sjogren’s disease. As Meghan O’Rourke eloquently explains in in her book, The Invisible Kingdom, when doctors do not understand a disease, they often default to psychological labels rather than consider the possibility that these are biologically based manifestations of a disease.
The obvious solution to suboptimal Sjogren’s care is to educate clinicians about Sjogren’s.
Unfortunately, Sjogren’s education is mostly ignored by medical schools, residencies, and continuing medical education programs. Overworked rheumatologists and primary care providers (PCPs) depend on Sjogren's experts and rheumatology organizations to provide clear guidance about Sjogren’s care. What little information is offered is sometimes inaccurate and out of date. While the Sjogren’s Foundation has provided a handful of continuing medical education presentations, these programs reach only a tiny fraction of practitioners. The Sjogren's Foundation cannot take on this monumental task alone.
I have tried to convince Sjogren's experts to provide and promote Sjogren's clinical education programs. The near total absence of Sjogren's medical education is appalling for a disease this common and this serious. I have taught more than 200 PCPs over the past decade about Sjogren's. Before my presentation, most of them thought of Sjogren's as a rare, unimportant sicca disease that they didn't need to be concerned about. Not one PCP had ever considered Sjogren's as a possible diagnosis in a patient. Fewer than five thought they had ever seen a Sjogren's patient in their entire career. I know this because I ask them this every time I teach. I know of only two medical schools that offer a lecture dedicated to Sjogren's. Despite the urgent need, no one is taking the lead on Sjogren's medical education.
Sjogren’s patients cannot afford to wait for medical education to catch up with the reality of their disease.
If your clinician is not taking Sjogren’s seriously, the Sjogren’s’ Is More Than “Just Sicca” handout will help you advocate for comprehensive care. If your clinician is not receptive to the information, it is usually best to find someone who is more knowledgeable or is willing to learn. If you are fortunate like I am, you have a rheumatologist who stays up to date with Sjogren’s. This handout is not meant for them, although they may be open to sharing it with their colleagues.
* The term “well-characterized” demonstrates why Sjogren’s should be called a “disease” and not a “syndrome”. A syndrome is a collection of symptoms that occur together. Syndromes are often poorly defined (not well-characterized), and do not have consistent biomarkers. The pathways leading to the disease are not understood. When these things are discovered, the term “syndrome” should be dropped. Examples of syndromes include fibromyalgia, ME/CFS (myalgic encephalomyelitis/ chronic fatigue syndrome), and Long COVID. Patients with these conditions, while real, are often treated dismissively because medical research has not been able to clearly define them yet. The term, “Sjogren’s syndrome”, reinforces dismissive attitudes toward the disease. Therefore, it should be called “Sjogren’s disease”, or simply, “Sjogren’s”. Sjogren’s is a distinct disease associated with physical findings and biomarkers. Many clinicians downplay Sjogren’s because they are not familiar with the current research that demonstrates the serious, systemic nature of the disease. I am hopeful the new research efforts aimed at Long COVID will lead to better understanding of all these neglected conditions, including Sjogren’s disease.