Let me start by telling you something about the name of this disease: It has been called Sjogren’s “Syndrome” since Dr. Henrik Sjogren wrote his extensive paper about it.
In recent decades, researchers have learned much more about symptoms that even Dr. Sjogren didn’t identify, as well as how the disease works.
The term “Syndrome” implies a collection of symptoms (often people consider them benign, nuisance symptoms) with no identifiable disease process causing them. We now know this is not the case – it is not a syndrome but in fact a very real disease. Top researchers and clinicians are now calling for the term “Syndrome” to be removed.
Sjogren’s is an very common autoimmune disorder you’ve probably never heard of. It occurs when an inflammatory response triggers the immune system to attack epithelial cells (a layer of cells that line many organs and blood vessels), and in particular moisture-producing (called exocrine) glands, which secrete fluids into tissues throughout the body to make things operate smoothly.
Ranging from your eyes and mouth to your entire gastrointestinal tract, kidneys, bladder, liver, lungs, blood vessels and skin – anything with epithelial tissues serving it can be targeted and damaged. When chronic systemic inflammation causes your immune system to attack these tissues, they can’t do their job.
Symptoms and Complications
When the organs served don’t get the fluid they need, more inflammation results there too. The most frequent symptoms of Sjogren’s Syndrome are:
- severe dry eyes and mouth
- joint pain and fatigue
- vaginal dryness
Other complications are:
- disorders of the lungs
- disorders of the kidneys
- disorders of the liver
- disorders of the intestines
- Non-Hodgkin’s Lymphoma
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Up to four million Americans have it, many are likely undiagnosed. Diagnosis typically takes years, and sometimes decades, due to symptoms being so varied and difficult to tie together. In addition, the diagnostic criteria hasn’t been nailed down yet, unfortunately. There are three distinct diagnostic classifications of Sjogren’s, and depending on which one your doctor is using, you may or may not get the label.
The stress of living with symptoms of Sjogren’s Syndrome but no diagnosis adds a layer of complication to the already frustrating and exhausting symptoms caused by the disorder. Often, people with Sjogren’s Symptoms are viewed as one of the “worried well” until it occurs to one of their physicians to test for it.
Most symptoms and complications are managed by specialists for each affected body system, and the condition is not considered fatal, despite having no cure. People living with this can range from having barely noticeable symptoms to disability from the impact it has on different body systems. If it sounds like you, ask your doctor about Sjogren’s.
Living with Sjogren’s Syndrome can make life cumbersome, to say the least. To get a good sense of what it’s like to live with Sjogren’s Syndrome, here’s my description of it right here.
Learn more by visiting the Sjogren’s Syndrome Foundation, Sjogren’s Advocate or checking out these resources for people living with Sjogren’s or other autoimmune disorders.
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