Sjögren's syndrome, a chronic autoimmune disorder that affects an estimated 4 million Americans, can often go undiagnosed for years, due to a lack of physician-patient dialogue and an array of symptoms that don’t seem particularly serious on their own. According to a recent study sponsored by Daiichi Sankyo, Inc in collaboration with the Sjögren's Syndrome Foundation, of 400 Sjögren's patients, half reported that the time between the onset of their symptoms and diagnosis was 3 or more years.
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In a patient with Sjögren's syndrome, the body’s immune cells attack and destroy the moisture-producing exocrine glands. The moisture produced by these glands is essential for the mouth, eyes, skin, gastrointestinal tract, vaginal area, and respiratory tract. Consequently, the most common symptoms of Sjögren's are dry mouth and dry eyes. Symptoms can vary from patient to patient, ad include difficulty talking, chewing, or swallowing, fatigue, joint pain, increased dental decay, vaginal and skin dryness, oral yeast infections, and enlarged parotid glands. Women are 9 times more likely than men to develop the disease, and diagnosis is typically made after the age of 40. Menopause can intensify dryness symptoms.

Sjögren's syndrom: barriers to diagnosis

There are many barriers to a Sjögren's syndrome diagnosis, which can explain why the average time from onset of symptoms to diagnosis is estimated to be approximately 7 years, and patients report seeing an average of 5 healthcare providers regarding their symptoms before getting a diagnosis. For one, the symptoms of Sjögren's— dry mouth, dry eyes, fatigue—do not seem like serious medical issues on their own, and many sufferers discount their symptoms as being no big deal. Physicians also tend to pass over symptoms that they may deem trivial, without seeing the bigger picture.

The symptoms of Sjögren's syndrome may mimic those of menopause, drug side effects, or allergies in some patients, while others receive false diagnoses of lupus, rheumatoid arthritis, fibromyalgia, chronic fatigue syndrome, and multiple sclerosis. In reality, Sjögren's syndrome affects 4 times as many Americans as lupus does, and 5 times the number of people as multiple sclerosis, yet with its low profile and seemingly benign symptoms, it is considered less often than these other diagnoses by many healthcare providers.

Translating research into practice

Sjögren's syndrome can have potentially life-threatening side effects, and without a proper diagnosis, these side effects are less likely to be caught and treated. Five percent of Sjögren's patients develop non-Hodgkin’s lymphoma, making someone with Sjögren's 44 times more likely to develop lymphoma than the general population. There is also the possibility of lung, liver, and kidney involvement, due to the lack of moisture produced in the body of a Sjögren's patient.

Diagnostic tests for Sjögren's syndrome include blood tests, salivary flow tests, lip biopsy, and a tear flow test. Without treatment, Sjögren's patients suffer from extreme dental decay, chronic yeast infections, vision problems, and inflammation. While there is no known cure, the goal of Sjögren's treatment is to reduce symptoms—both the discomfort they bring to patients, and the toll they take on the body. Lifestyle changes such a using a humidifier, sipping water frequently, wearing sunglasses, and sucking on sugar-free candies are often recommended. Some patient use OTC remedies such as saliva substitutes, artificial tears, and NSAIDs, while those with more severe rheumatic involvement may be prescribed DMARDs.

If HCPs begin considering Sjögren's syndrome as a possibility for their patients earlier on in the diagnostic process, they could save their patients years of suffering without a diagnosis. Because so many of the symptoms affect only one body area—dry eyes, dry mouth, dry vaginal area—it is important for the specialists who treat these areas to also be considering Sjögren's syndrome. For dentists who see patients with rapid dental decay, they should consider doing a salivary flow test, or recommending the patient seek further testing for Sjögren's. Eye doctors, gynecologists, gastroenterologists, and rheumatologists should also be on the lookout for symptoms that match up with Sjögren's syndrome. By raising awareness of the disease, the Sjögren's Syndrome Foundation hopes to reduce the average diagnosis time for Sjögren's, and enable Sjögren's patients to live healthier lives.