Skip to main content

In the Spotlight: Sjogren's Syndrome

Dr. Taft's blog entry yesterday on surviving the holidays could not be more timely. This is the month of December, and I am just now writing the November post for our Rare Disease of the Month blog. This month we're discussing Sjogren's Syndrome. Although you may have never heard of it, the disease currently affects over 4 million Americans. In case you're wondering (like I was), it is pronounced "SHOW-grins." It was named after the man who discovered it in 1933, Dr. Henrik Sjogren. One well-known celebrity with Sjogren's Syndrome is the tennis player Venus Williams.   

Photo credit: What If Gourmet

Snapshot:  Sjogren's Syndrome is an autoimmune disease where the person's white cells are attacking the body's moisture-producing glands. Nine out of ten patients are women, and half of the time it occurs  in the presence of another autoimmune disease such as lupus or arthritis. The hallmark symptoms are dry eyes and dry mouth, but since this diseases is systemic, it can affect many other areas of the body. Some of the parts of the body that can be affected are kidneys, lungs, liver, pancreas, the GI system, and the central nervous system. Some patients experience joint pain and extreme fatigue.  If you want to see a great snapshot of Sjogren's, check out this video clip put out by the Sjogren's Syndrome Foundation. 

Photo credit: US Pharmacist

What About Diagnosis and Treatment?
Because the symptoms patients may experience are similar to other diseases, the average length of time to receive a diagnosis of Sjogren's is 3.9 years. Often time it can be overlooked or misdiagnosed. There is no single test that confirms Sjogren's Syndrome. Ophthalmologists typically are the doctors who diagnose this. After doing a physical exam and listening to your symptoms, they use a variety of tests to make a diagnosis. The tests include blood tests to look for abnormal antibodies or inflammation, as well as eye tests that measure tear production and dryness. Dental exams looking for salivary abnormalities help as well. 

There is no cure for Sjogren's and different patients report different levels of severity of symptoms. Treatments can include over-the-counter as well as prescription medications. Some patients require immuno-suppressive drugs to treat their systemic disease. 

Photo credit: Tufts University

What About the Social and Emotional Impact?
There are few research studies on the social and emotional impact of Sjogren's Syndrome.  Some of the symptoms of the illness are invisible like extreme fatigue, joint pain, and vaginal dryness. That does not mean that symptoms are not life-altering though. On top of this, other symptoms like red eyes, tooth decay, swollen parotid glands and skin rashes may be more visible and present more challenges to a patient's social life and body image.  Social withdrawl, depression, anxiety can happen, as they can for other patients with chronic illness. 

Helpful Resources:

Sjogren's Syndrome Foundation
Search for local Support Groups
Celebrate World Sjogren's Day on July 23
Sjogren's National Patient Conference 
Clinical Trials for Sjogren's Syndrome

Popular posts from this blog

Let's Talk About "All In Your Head"

If I had to vote for a phrase, just 4 short words, that cause more problems in our society than most others it would be these:
All in your head.
To hear these words as a person with medical symptoms brings about such a cascade of thoughts. Anything from "My doctor doesn't believe me" to "Are my symptoms really happening?" with corresponding emotions of anxiety, confusion, anger, even rage.
I spend a lot of time undoing the damage these 4 words can do in the patients I see. They've been told, either directly or indirectly, their disease is psychologically based. And that means it's really not that bad, that they should just get over it and move on. It's a running thread in most of the patients with any "functional" diagnosis I've seen, such as irritable bowel syndrome, but also appears in those with "organic" conditions - those diseases perceived as real like inflammatory bowel disease.
These 4 words are part of the fundamenta…


I've been thinking a lot about how we live in an era of infinite access to infinite information (thanks, internet tubes!) yet we still fall into many of the well-established psychological laws, if we can call them that, of human behavior.  Don't worry, this isn't going to be some drawn out post on social psychology. Wikipedia is great for that.

I want to talk about bubbles.  Information bubbles, that is. And how each one of us lives in one to some extent, no matter how educated or enlightened we see ourselves to be. And even if we know we live in said bubble, it takes being shown information that directly conflicts with how you think things are, or should be, and the result is you feel kinda ew - the technical term for "ew" being cognitive dissonance.

I live in a bubble.

In my bubble is the world of academic medicine, academic health psychology, and a circle of psychologists dedicated to people living with chronic digestive illness.  I live in Chicago, a major me…

Medical PTSD

“It is just an illusion here on Earth that one moment follows another one, like beads on a string, and that once a moment is gone, it is gone forever.”  - Kurt Vonnegut, Slaughterhouse Five 
A few years ago, my gastroenterologist wanted me to have something called an esophageal manometry to better understand how my newly diagnosed eosinophilic esophagitis may have been affecting how the muscles in my esophagus were functioning.  I work with the guys who wrote the book on esophageal disease, and these guys do a lot of manometries. I know all about esophageal manometry.

My mind immediately went to images of a small bowel enteroclysis I'd had at least a decade prior. My body grew tense and it was almost as if I was back in that cold room with the cold metal table and the cold radiologist, who just didn't believe me when I told her how bad my gag reflex was before she placed a tube down my throat to inject my small intestines with barium.

It took what seemed like forever to get th…