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Sjögren’s Syndrome: Chameleon-Like and Complex
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By Carol Lippert Gray
Sjögren's syndrome, a difficult to diagnose autoimmune disease, is like the ‘Where’s Waldo’ of ailments.
First, it’s hard to recognize or diagnose because its symptoms may mimic those of menopause, pharmaceutical side effects, or other medical conditions (including lupus, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, and multiple sclerosis). In fact, it can take nearly three years to receive a proper diagnosis.
Second, because it affects everyone differently, it will appear in different forms in different patients. Each patient needs a custom-made care plan developed in cooperation with her primary care provider, dentist, eye-care provider, and other specialists.
And third, it occurs alone only about half of the time; in other cases, it appears in conjunction with another autoimmune connective tissue disease.
Sjögren's syndrome, a difficult to diagnose autoimmune disease, is like the ‘Where’s Waldo’ of ailments.
First, it’s hard to recognize or diagnose because its symptoms may mimic those of menopause, pharmaceutical side effects, or other medical conditions (including lupus, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, and multiple sclerosis). In fact, it can take nearly three years to receive a proper diagnosis.
Second, because it affects everyone differently, it will appear in different forms in different patients. Each patient needs a custom-made care plan developed in cooperation with her primary care provider, dentist, eye-care provider, and other specialists.
And third, it occurs alone only about half of the time; in other cases, it appears in conjunction with another autoimmune connective tissue disease.
According to the 2016 Sjögren's Foundation survey Living with Sjögren's, respondents reported having been diagnosed by a healthcare provider with an average of five other health conditions, including gastroesophageal reflux disease (GERD) (45%), Raynaud’s (38%), neuropathy (38%), sinusitis (33%), hypertension (31%), and irritable bowel syndrome (31%).
But now that we’ve established that it’s chameleon-like, elusive, and complex...what is it exactly?
“Sjögren's (pronounced SHOW-grins) is a systemic autoimmune disease in which the body attacks moisture-producing glands. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies, and lymphomas,” according to Elizabeth Trocchio Bryant, senior director of marketing at the Sjögren's Foundation.
Furthermore, Bryant says, “Nine out of 10 diagnosed patients are women,” although it can appear in all ages, races, and genders. The average age of diagnosis is around 40. Still, Bryant says an increasing number of patients under age 18 are being diagnosed. “It’s often misrepresented as a rare disease. However, it is estimated that there are four million Americans living with it, making it one of the most prevalent autoimmune diseases.”
Reaching a Diagnosis
“Currently, no single test will confirm the diagnosis,” Bryant says. “Rheumatologists have primary responsibility for diagnosis and management and can conduct a series of tests and ask about symptoms. Your eye doctor or an oral medicine specialist also might run tests if “Sjögren's is suspected.”
Your physician will need to review your complete medical history, including discussion of your symptoms. In addition, there are objective tests that can narrow things down. These include:
Your doctor also may ask these questions about your eyes and mouth:
Treatment
“Most of the treatment for Sjögren's syndrome is aimed at relieving symptoms of dry eyes and mouth and preventing and treating long-term complications, such as infection and dental disease. Treatments often do not completely eliminate the symptoms of dryness,” according to the American College of Rheumatology (ACR).
Living with Sjögren's
“Most patients with Sjögren's syndrome remain healthy,” the ACR says, "but some rare complications have been described, including an increased risk for cancer of the lymph glands (lymphoma). Thus, regular medical care and follow up is important for all patients.”
When asked whether Sjögren's affects life expectancy or just quality of life, Bryant said, “It’s a complex disease and, unfortunately, there’s no single prognosis or disease progression. This is why an early diagnosis, and proper treatment and management, are important.”
But now that we’ve established that it’s chameleon-like, elusive, and complex...what is it exactly?
“Sjögren's (pronounced SHOW-grins) is a systemic autoimmune disease in which the body attacks moisture-producing glands. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies, and lymphomas,” according to Elizabeth Trocchio Bryant, senior director of marketing at the Sjögren's Foundation.
Furthermore, Bryant says, “Nine out of 10 diagnosed patients are women,” although it can appear in all ages, races, and genders. The average age of diagnosis is around 40. Still, Bryant says an increasing number of patients under age 18 are being diagnosed. “It’s often misrepresented as a rare disease. However, it is estimated that there are four million Americans living with it, making it one of the most prevalent autoimmune diseases.”
Reaching a Diagnosis
“Currently, no single test will confirm the diagnosis,” Bryant says. “Rheumatologists have primary responsibility for diagnosis and management and can conduct a series of tests and ask about symptoms. Your eye doctor or an oral medicine specialist also might run tests if “Sjögren's is suspected.”
Your physician will need to review your complete medical history, including discussion of your symptoms. In addition, there are objective tests that can narrow things down. These include:
- Blood tests that look for specific marker antibodies.
- Eye tests, including the Schirmer test (it measures tear production) and Rose Bengal and Lissamine Green (which use dyes to examine the surface of the eyes for dry spots).
- Dental tests, including salivary flow and salivary gland biopsy.
Your doctor also may ask these questions about your eyes and mouth:
- How long have you been experiencing dry eye?
- Do you have a foreign body sensation in your eye?
- How often do you use artificial tears each day?
- How long have you had dry mouth?
- Do you experience salivary gland swelling?
- Do you need liquids to swallow foods?
Treatment
“Most of the treatment for Sjögren's syndrome is aimed at relieving symptoms of dry eyes and mouth and preventing and treating long-term complications, such as infection and dental disease. Treatments often do not completely eliminate the symptoms of dryness,” according to the American College of Rheumatology (ACR).
Living with Sjögren's
“Most patients with Sjögren's syndrome remain healthy,” the ACR says, "but some rare complications have been described, including an increased risk for cancer of the lymph glands (lymphoma). Thus, regular medical care and follow up is important for all patients.”
When asked whether Sjögren's affects life expectancy or just quality of life, Bryant said, “It’s a complex disease and, unfortunately, there’s no single prognosis or disease progression. This is why an early diagnosis, and proper treatment and management, are important.”
RESOURCES:
Sjögren's Foundation
Living with Sjögren’s: Summary of Major Findings Survey
American College of Rheumatology
Sjögren's Syndrome Risk Factors (Johns Hopkins Medicine)
Sjögren's Foundation
Living with Sjögren’s: Summary of Major Findings Survey
American College of Rheumatology
Sjögren's Syndrome Risk Factors (Johns Hopkins Medicine)
Carol Lippert Gray is an award-winning public relations professional and longtime freelance writer and editor. She has been published in fields as diverse as crafts and corporate finance, parenting and philanthropy. She is also a regular contributor for Sanctuary.
