In recent years, if you’ve heard of Sjogren’s, you have heard it with “syndrome” or “disease”, or by itself. Which leads many to ask “What’s the difference between Sjogren’s Syndrome and Sjogren’s Disease?”.
It’s the same thing. Want to know why you see both? Read the long answer.
Since 1933, when Swedish Dr. Henrik Sjogren thoroughly documented the combination of dry eyes and mouth with arthritis among patients, it’s been known as “Sjogren’s Syndrome”.
According to dictionary.com, a “syndrome” is “a group of symptoms that together are characteristic of specific disorder, disease, or the like”. Sounds reasonable, right? Well, sort of.
Syndrome Vs. Disease
Think of the terms IBS (inflammatory bowel syndrome) and IBD (inflammatory bowel disease). They are two different diagnoses, and there is a difference in the minds of the treating physicians.
In IBS, a patient has chronic difficulties with constipation and/or diarrhea, and pain. The difficulties are significant enough that it interferes with living your life. There is real inflammation present and it is a medical disorder. However, the cause is not known and there is no single diagnostic test to identify it.
Add to that, women are twice as likely to suffer from IBS than men, and you’re moving into “psychosomatic” territory. What’s psychosomatic, you ask? Psycho (mind) -> somatic (body). In other words the bodily symptoms stem from the mind, or it’s caused by stress and worrying.
Go to a new doctor and report that you’ve got IBS, chances are good you just got a big fat imaginary stamp on your forehead. SOMATICIZER. A recommendation for an antidepressant and/or referral to a mental health specialist may come next. Not that it’s completely unwarranted, but that’s a separate issue.
IBD, on the other hand, is an umbrella term for two known diseases: Crohn’s Disease, and Ulcerative Colitis. Go to a new doctor and report one of these, and you’ve just gotten plunked into a completely different category in his or her mind.
Back to Sjogren’s:
When Dr. Sjogren recognized that there was a distinct group of patients with significant dryness and joint pain, that’s all that was known. So of course, it was a syndrome.
But things have come far since Dr. Sjogren’s days – we now know it’s much more than annoying dryness and a little joint pain.
These days, google “Sjogren’s Syndrome”, and the majority of results you’ll see will still list dry eyes, dry mouth, and maybe joint pain or fatigue. To practitioners not well-versed in Sjogren’s, these will appear as a cluster of unexplained nuisance symptoms.
In fact, until recently, the International Classification of Diseases (diagnostic code) has used the term “Sicca (dryness) Syndrome”. At least we’ve advanced to “Sjogren’s Syndrome” in the diagnostic code, but really, how serious does that sound? Meh.
The problem is, it’s way more than that and has serious health implications.
“Here are some recommendations for easing the dryness and get some exercise to reduce your fatigue” may be all you get from your doctor. This is woefully inadequate, yet it persists.
It’s a Disease
There is a concrete biological component to it. Among other things, scientists have determined that autoantibodies (SSA/SSB) are common in Sjogren’s patients, although not exclusive.
Researchers now understand it involves an immune system attack on epithelial tissues, which include moisture-producing glands – but it goes beyond that. Some researchers have proposed the term “autoimmune epithelitis” in place of “Sjogren’s Syndrome”, which is a more complete term.
These tissues are also found in numerous organs/systems throughout the body, leading to complications that are far from benign.
Despite the welcome progress in the diagnostic code, the term “syndrome” is still troublesome for those who fully understand what it’s like to live with the disease. Even with it being one of the more common autoimmune diseases, Sjogren’s is one of the least understood out there. It is unfortunately behind the curve in research and medical education.
Why it is Still Called a Syndrome?
Blame the updated ICD (diagnostic) code. Or blame medical schools that don’t provide adequate training about the disease. Or you could blame Google.
Regarding ICD: Advancing the official diagnostic term to “Sjogren’s Syndrome” is a good thing, but we’re not “there” yet with it. At least it’s moving in the right direction.
Regarding medical schools: There is an enormous amount of information they must pass on – but if they went deep with everything known about all the diseases out there, students would never finish learning. Sjogren’s education has been a casualty of that, and continues to be.
Regarding Google: The more information gets loaded on to the world wide web about Sjogren’s Syndrome, the easier it is to find it listed under that name. It’s a catch-22 of sorts. Those who want to educate about “Sjogren’s Disease” know their information won’t be found as readily, and as a result, use the more familiar term.
I am optimistic that as more knowledge of the disease spreads, it will be more obvious that it’s not just a collection of nuisance symptoms of unknown origin. It’s a disease – with real health ramifications. Recognizing this must happen before patients are treated adequately. That time can’t come soon enough.