Sjögren's Disease in Canada: Facts and Research

Sjögren’s disease is a long-term autoimmune disease in which the immune system attacks the glands that make tears and saliva. Dry eyes and dry mouth are the best-known part, not the whole illness. Many people find the fatigue harder to live with than the dryness.

By the numbers in Canada

About 1%of Canadians live with Sju00f6gren's disease, and 90% of them are women, according to the Sju00f6gren's Society of Canada, which describes the disease as often undiagnosed, misdiagnosed and undertreated.

Source: Sju00f6gren's Society of Canada, 2026

Arthritis Society Canada reports that 90% of people diagnosed are women, that it usually begins after age 45 but is also seen in children and young adults, and that about half of the people diagnosed also have another rheumatic or connective tissue disease such as rheumatoid arthritis, lupus or scleroderma. Source: Arthritis Society Canada, 2026
Beyond dryness: Arthritis Society Canada states the disease can affect joints, muscles and nerves, and organs such as the lungs and kidneys, or glands such as the thyroid, and that complications beyond dry eyes and dry mouth occur in fewer than 20% of people. The Sju00f6gren's Society of Canada puts it plainly: Sju00f6gren's is a systemic disease, not limited to dryness, and can affect every organ and system in the body. Source: Arthritis Society Canada and Sju00f6gren's Society of Canada, 2026
The Sju00f6gren's Society of Canada reports that the average age of onset is between 35 and 65, although the disease occurs at all ages including in children, and that the number of men being diagnosed is increasing. Source: Sju00f6gren's Society of Canada, 2026

Worldwide60.82 per 100,000 people is the pooled global prevalence of primary Sju00f6gren's reported in an umbrella review of systematic reviews, at 116.72 per 100,000 in women and 5.53 in men, with a female to male incidence ratio of about 9 to 1. This international estimate sits well below the 1% figure Canadian organisations use, which is one reason under-diagnosis is a live issue.Source: Rheumatology Advances in Practice, umbrella review of systematic reviews, 2024

What Sjögren’s disease is, and what it is not

It is not a nuisance condition about needing eye drops. The Sjögren’s Society of Canada calls it a chronic, systemic, inflammatory autoimmune disease, says it is not limited to dryness and can affect every organ and system in the body. Arthritis Society Canada lists joints, muscles, nerves, lungs and kidneys among the areas involved.

It is also not always on its own. Arthritis Society Canada reports about half of people diagnosed have another rheumatic or connective tissue disease too, such as rheumatoid arthritis, lupus or systemic sclerosis. Vasculitis is a less common complication.

Signs and symptoms

Dry, gritty eyes, sometimes with burning or light sensitivity
Dry mouth that makes dry food hard to swallow, with more cavities
Fatigue out of proportion to activity
Joint pain, stiffness or swelling in smaller joints on both sides
Swollen salivary glands by the ears or under the jaw
Dryness elsewhere: skin, nose, throat and vagina
Numbness, tingling or burning from nerve involvement

Symptoms vary widely, and fatigue and pain do not track with the dryness.

An older woman seated in a bright room, massaging her hands. — Joint pain is common in Sju00f6gren's disease, which Canadian organisations describe as systemic rather than limited to dryness. Illustrative photograph.

What raises the risk

Some risk factors cannot be changed:

Being female: Canadian organisations report 90% of people diagnosed are women
Age, with onset most often between 35 and 65
Having another rheumatic or connective tissue disease

Some things that add to dryness can often be worked on, usually with support from a health care team:

Dental care, since reduced saliva raises the risk of cavities
Medicines that add to dryness, including some antihistamines, antidepressants and bladder medicines
Dry surroundings and smoking: heated air, wind, long screen use

How Sjögren’s disease is diagnosed in Canada

There is no single test, part of why the Sjögren’s Society of Canada calls the disease often undiagnosed, misdiagnosed and undertreated. Arthritis Society Canada lists the Schirmer tear test for tear production, lissamine green dye staining of the eye surface, antibody blood tests including antinuclear and anti-SSA antibodies, and a biopsy of a minor salivary gland from inside the lip. Because the disease is systemic, assessment looks beyond the glands: lung imaging, kidney blood and urine tests, or nerve testing. A rheumatologist usually leads.

Treatment and day-to-day management

Care aims at symptoms and at protecting the eyes, mouth and organs. A health care team may discuss:

Artificial tears and gels, prescription drops such as cyclosporine, and punctal plugs
Saliva substitutes and medicines such as pilocarpine, with dental care and fluoride
Hydroxychloroquine and other immune-modifying medicines for joint and systemic features
Further immunosuppressive treatment if organs are involved
Physiotherapy, occupational therapy and pacing, plus monitoring for lymphoma

What suits one person will not suit another. These are decisions for you and your own clinician.

When to talk to a doctor

Seek urgent care for sudden vision change, severe eye pain, or an eye that turns red and painful.
Seek urgent care for new breathlessness, chest pain, coughing up blood, or new weakness or numbness in a limb or the face.
Book an appointment promptly for a salivary gland that becomes hard or persistently swollen, or for unexplained weight loss, night sweats or new lumps.
Book an appointment for dryness lasting months with joint pain or unusual fatigue, so Sjögren’s is considered rather than put down to ageing.

Why clinical research matters for Sjögren’s disease

There is currently no systemic treatment approved for Sjögren’s disease. Reporting phase 3 results for the candidate ianalumab in August 2025, Novartis described a landscape with no approved systemic treatments and only limited symptomatic options. Late-stage trials are testing medicines acting on the immune pathways involved, including B-cell directed approaches. Other questions stay open: why fatigue and pain do not track with gland damage, how to shorten the time to diagnosis, and who is at higher risk of lung, nerve or lymphoma complications.

Taking part is voluntary. You give informed consent first, and you can stop at any time without affecting the care you get from your own doctor. No one can say in advance whether a study will help you personally.

Learn more from Canadian sources

Where this information comes from (5 sources)

This page is written in plain language for people considering clinical research. It is general health information, not medical advice, and it does not replace a conversation with your own doctor or nurse practitioner.

Common questions

Is Sjögren's just dry eyes and dry mouth?

No. Dryness is the most recognisable part but not the whole disease. The Sjögren's Society of Canada states that Sjögren's is a systemic disease, is not limited to dryness, and can impact every organ and system in the body. Arthritis Society Canada lists joints, muscles, nerves, lungs, kidneys and the thyroid among the areas that can be involved, and reports that complications beyond dry eyes and dry mouth occur in fewer than 20% of people. Fatigue is one of the features people most often describe as disabling, and it is not explained by dryness alone.

Why does it take so long to be diagnosed?

There is no single test. Dry eyes and dry mouth are common for many reasons, including medicines and ageing, so they are easy to attribute to something else. Diagnosis usually needs a combination of eye tests such as the Schirmer tear test and dye staining, antibody blood tests, and sometimes a biopsy of a minor salivary gland from inside the lip. The Sjögren's Society of Canada describes the disease as often undiagnosed, misdiagnosed and undertreated. Keeping a written record of your symptoms, how long they have lasted and what makes them worse gives a clinician more to work with.

Why would someone with Sjögren's disease consider a clinical study?

Because there is currently no approved systemic treatment for the disease itself, only treatments aimed at symptoms. Studies are how candidate medicines that target the immune pathways involved are tested, and how researchers learn which people respond and which do not. Taking part usually means closer monitoring and extra assessments than routine care. Participation is voluntary, you give informed consent before anything begins, you can withdraw at any time without affecting the care you get from your own clinicians, and no one can say in advance whether a study will help you personally.

What to do next

Talk to your doctor. This guide is information, not medical advice.
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Sjögren’s Disease