More than 4 million Americans suffer from Sjögren’s syndrome, 90% of whom are women. Yet the disease leads to more than the discomfort of a dry mouth, affecting the ability of these patients to function both at home and in the workplace, according to a recent survey of 2,962 patients conducted by Harris Poll on behalf of the Sjögren’s Syndrome Foundation (SSF).
“Sjögren’s is a systemic autoimmune disease that affects the entire body. Approximately 1% of the US population, mostly adult women, are affected. This is similar to the number of women living with breast cancer,” said SSF CEO Steven Taylor.
“Along with symptoms of extensive dryness, other serious complications such as profound fatigue, chronic pain, organ dysfunction, neuropathies, and lymphomas can greatly impair a patient’s ability to perform everyday tasks,” said Taylor. “This research brings to the forefront the significant quality of life challenges faced by Sjögren’s patients in trying to live with this often debilitating disease.”
About half of the patients described dry eyes (54%), fatigue (54%), and dry mouth (50%)—the 3 most commonly reported symptoms—as having a major impact on their lives in the previous year. Also, 71% agreed that their Sjögren’s gets in the way of their daily tasks, and 49% said it has a great deal of negative impact on participating in hobbies, social activities, and extracurricular activities.
Furthermore, 79% said their disease has led them to make at least one day-to-day change around the house such as stopping or cutting back on housework (74%) or hiring additional service providers to help with housecleaning or child care (38%).
More than half, at 54%, said they have made at least one change regarding work, including having to stop working (28%), reducing their schedule of hours (28%), and making a career change to a less demanding job (27%) due to the disease.
Additionally, 74% said living with Sjögren’s adds a significant emotional burden to their life, having at least some negative impact on relationships with friends and family (63%), sex life (59%), relationships with their spouse or partner (55%), and caring for children (19%).
“If you break a bone and wear a cast, others can see your injury and understand your limitations,” said Taylor. “But with Sjögren’s, your symptoms are not clearly visible so not only do you have to put up with challenging, often painful, and sometimes debilitating conditions every day, but you may face disbelief from family, friends, co-workers, and even doctors who don’t understand what’s wrong with you.”
The SSF estimates that 2.5 million patients are currently undiagnosed and a correct diagnosis takes an average of 3 years.
“Sjögren’s is often undiagnosed or misdiagnosed because disease symptoms frequently overlap or mimic those of menopause, allergies, or medical conditions such as lupus, rheumatoid arthritis, fibromyalgia, and chronic fatigue syndrome,” said Nancy Carteron, MD, clinical associate professor of medicine at the University of California San Francisco and chair of SSF’s Medical and Scientific Advisory Board.
Many known co-morbidities or manifestations of Sjögren’s can occur in conjunction with the disease. Patients reported an average of 4 other health conditions, including gastroesophageal reflux disease, Raynaud’s, neuropathy, sinusitis, hypertension, and irritable bowel syndrome.
“Healthcare providers sometimes treat each symptom individually and do not recognize that a systemic disease is present,” said Carteron.
Rheumatologists have the primary responsibility for managing Sjögren’s. Ophthalmologists, optometrists, dentists, and other specialists also may see and treat patients depending on their complications. According to the survey, Sjögren’s patients see an average of 5 different healthcare professionals at least once a year to help manage their disease.
Until 2016, no standard of care existed for the management of Sjögren’s. But the SSF, with the assistance of hundreds of physicians and dentists, then published clinical practice guidelines to standardize patient care and give doctors a roadmap of how to treat and manage their Sjögren’s patients.
There is no cure for Sjögren’s, but there are treatments that may improve various symptoms and prevent complications. On average, patient said they use nearly 9 medications and treatments to help with their Sjögren’s symptoms. Also, 96% wish there were additional systemic therapies available to help treat their symptoms.
“Autoimmune diseases such as Sjögren’s remain among the most poorly understood and poorly recognized of any category of illness. The SSF is committed to accelerating the development of better diagnostic, management, and therapeutics that will have the greatest potential impact on improving the quality of life for Sjögren’s patients,” said Taylor.
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