Sjögren's disease (formerly known as Sjögren's syndrome) is a serious, systemic autoimmune disease that can be progressive and significantly impact daily life.1-7 It can affect the glands that produce tears and saliva, causing dry eyes and dry mouth, but it may also affect other parts of the body and organs, leading to fatigue, pain, and additional symptoms.8 As many as 4 million people in the U.S. are living with the disease, and while the average female to male ratio is 9:1, anyone can develop it.9,10

What is Sjögren’s disease?

Sjögren's disease symptoms can vary widely and may include 11:

  • Glandular symptoms:
    • Dry, burning, or gritty eyes that may contribute to blurry vision or light sensitivity
    • Dry mouth that can lead to difficulty swallowing, changes in taste, and dental problems
    • Vaginal dryness or erectile dysfunction12
  • Systemic symptoms11:
    • Severe fatigue
    • Headaches and brain fog
    • Joint and muscle pain or weakness
    • Numbness or tingling in the hands and feet (neuropathy)
    • Dry, itchy skin or rashes

In Sjögren's, disease activity can be present even when symptoms are not. Disease activity is a measure of how much the disease is affecting the whole body. It considers both the symptoms you can see and feel and underlying activity that may be harder to notice, such as inflammation and other signs of deeper organ involvement.10

Due to underlying disease activity, the impact of Sjögren's can extend far beyond dryness. Sjögren's can cause damage to the lungs, nerves, glands, and other organ systems, as well as an increased risk of lymphoma.10,13

Many symptoms overlap with other conditions, making them difficult to recognize, discern and diagnose.14 If you experience persistent or unexplained symptoms, share them with your healthcare provider, even if they seem unrelated.

There is no single test to diagnose Sjögren's disease.14

Diagnosis typically involves a comprehensive review of your medical history alongside specific clinical tests, including 14:

  • Blood tests (to check for specific antibodies)
  • Eye tests (to measure tear production and eye surface damage)
  • Saliva tests (to measure gland function)
  • Lip biopsy
  • Physical exams

A rheumatologist is best trained to diagnose and treat Sjögren's, often collaborating with ophthalmologists, dentists, ENT physicians, and dermatologists, as needed.15

Sjögren's disease is frequently misdiagnosed or missed altogether because its symptoms are diverse and may not appear connected.16

When speaking with a doctor, be prepared to describe all your symptoms—not just dryness—so the provider can see the complete picture and pursue appropriate testing.

Sjögren's disease affects everyone differently, and its progression can be unpredictable.1

Many people with Sjögren’s experience symptoms such as dryness, fatigue, or joint pain.17 However, symptom severity does not always reflect systemic disease activity.10 Organ involvement may be present even when symptoms feel stable or are not noticeable, which is why disease activity is assessed using both reported symptoms and objective clinical, laboratory, and organ-specific findings.10,18

Existing symptoms may worsen and if left unmanaged, Sjögren's can lead to serious complications such as organ damage and an increased risk of lymphoma and interstitial lung disease.10,18

Treating Sjögren’s involves looking at the whole person. Most treatments focus solely on managing symptoms, but some therapies are beginning to address underlying disease activity.19

Talk to your healthcare provider about your unique experience and the full picture of your symptoms.

Sjögren's disease can be a constant presence, affecting physical health and emotional well-being.20 Symptoms like fatigue, pain, and dryness may impact work, social activities, relationships, intimacy, and mental health, along with the time and cost of ongoing care.20 Many people feel their symptoms are dismissed by providers, friends, or family—especially women in midlife, whose symptoms may be mistaken for menopause.14,20

If your symptoms are affecting your life, you deserve to be heard. Tracking symptoms and questions between appointments can help you communicate more effectively with your care team and advocate for the care you need.

Every experience with Sjögren's disease is different, but no one should have to navigate it alone. SJÖUT for Sjögren's is a resource created to help people better understand the disease and feel more prepared to navigate daily life. The site offers educational content, practical tips, guidance for talking with your doctor, and real stories from people living with Sjögren's.

Whether you're newly diagnosed or have lived with the disease for years, SJÖUT can help you feel more informed and supported. Visit SJÖUT for Sjögren's to explore these resources and connect with a community that understands.

What causes Sjögren’s disease?

Microscopic view of cells

Autoimmune disease

Your immune system is responsible for fighting infection. In autoimmune diseases like Sjögren's, the immune system mistakenly attacks healthy tissue.8,21

B and T cells in the lymph nodes

B cell-driven

Sjögren's is thought to be driven by overactive immune cells known as B cells. These overactive B cells can produce autoantibodies that can cause inflammation in the glands that produce tears and saliva and may impact other organs.8

Actor portrayal, doctor examines patient

Progressive disease

This cycle can lead to chronic inflammation and irreversible tissue damage. Meet with your healthcare provider regularly to monitor the progression of your disease.9

Learn more about the role of B-cells in Sjögren's here.

The impact of Sjögren's disease

≤ 4M
People affected⁹

Estimated to be living with Sjögren's in the U.S.

9:1
Women:men

Most people diagnosed with Sjögren's are women[10]

1 in 5
People with Sjögren's

Develop interstitial lung disease (ILD)[18]

Ready to learn more and connect with the Sjögren's community?

SJÖUT for Sjögren's connects you with real patient stories, practical tips for daily life, and guidance for talking with your care team. Whether you're newly diagnosed or have lived with Sjögren's for years, SJÖUT can help you feel more informed and supported. 

Visit SJÖUT for Sjögren's
More about Sjögren’s disease

Sjögren's disease (formerly Sjögren's syndrome) is a systemic autoimmune disease that can be serious and progressive.1-4 In Sjögren's, the immune system, which normally protects the body, mistakenly attacks healthy tissue.8 This often includes the glands that make tears and saliva, which can cause dry eyes and dry mouth.8 Because Sjögren's is a systemic condition, it can also attack other organs and tissues, causing fatigue, pain, and symptoms affecting other parts of the body.8

Symptoms of Sjögren's disease vary widely from person to person but are generally categorized into gland-related dryness and systemic (whole-body) complications 11:

  • Glandular symptoms: Dry, gritty, or burning eyes; dry mouth leading to swallowing difficulties, changes in taste, and dental issues; swollen salivary glands22
  • Systemic symptoms: Severe, chronic fatigue; joint and muscle pain; nerve-related numbness or tingling (neuropathy); dry skin or rashes; and lung or other organ involvement

Because these symptoms often overlap with other conditions, consulting a healthcare professional is critical for an accurate evaluation.14

There is no single test to diagnose Sjögren's disease. Instead, a rheumatologist confirms a diagnosis using a combination of evaluations, including 14:

  • Blood Tests: to detect specific autoimmune antibodies
  • Eye Tests: to measure tear production
  • Salivary Gland Tests: to measure the flow and function of saliva
  • Salivary Gland Biopsy: to assess inflammation
  • Medical History & Physical Exams: to review dryness and systemic symptoms

A rheumatologist typically leads this diagnostic process, often collaborating with ophthalmologists, dentists, and ENT physicians.14

Sjögren's disease can be difficult to recognize because symptoms often develop gradually, vary widely, and resemble other conditions such as menopause, lupus, or fibromyalgia.16 Sharing all of your symptoms with a healthcare provider—even ones that seem unrelated—can help them see the full picture and pursue appropriate testing.

Sjögren's disease is a serious, systemic autoimmune disease.1-4 For some people, it mainly causes dryness, fatigue, and pain.8 For others, it can affect organs and body systems, including the lungs and nerves, and may increase the risk of lymphoma.10 Because experiences vary, ongoing care with a healthcare provider is important for monitoring symptoms and identifying potential complications.

There's no way to predict exactly how Sjögren's disease will affect any one person over time. Some people continue to mainly experience dryness, fatigue, and pain, while others may develop involvement in additional organs.8 In addition to treatment, regular monitoring with a rheumatologist and your broader care team is the best way to track changes early and adjust your care plan.15

There is currently no cure for Sjögren's disease, but treatments in development may be able to address the underlying disease rather than only symptoms.19 Treatment plans are individualized and may focus on managing symptoms, addressing affected organs, and monitoring disease activity.19 Speak with your healthcare provider before starting, stopping, or changing any treatment.

Disease activity is a measure of how much the disease is actively affecting the body at a given time, including aspects you may not see, such as inflammation, as well as symptoms you can see and feel.10 It is important to recognize that not all signs of disease activity will appear during a physical exam.18 Critical indicators of disease can lie beneath the surface, requiring deeper, more comprehensive assessment.14 Regular monitoring with a rheumatologist is the best way to assess underlying disease activity.

Progression is unpredictable—it may be slow in some patients whose disease remains relatively stable, while others may experience worsening symptoms or develop new systemic manifestations of disease.1 Some patients may develop severe symptoms and/or lymphoma.13

Sjögren's disease is a chronic, long-lasting autoimmune disease.1-4 It is important to note that in Sjögren's, even when symptoms are not externally present, underlying disease activity may be present.10,18 Working with your health care team can help you develop a treatment plan and monitor your health.

EULAR Sjögren's syndrome disease activity index (ESSDAI) measures systemic disease activity in Sjögren's. Each individual domain is divided into 3 to 4 levels of activity (no, low, moderate, or high activity), and the corresponding scores are multiplied by the domain weight (a scale of 1 to 6, depending on domain). The sum of individual domains is the ESSDAI score, with a maximum score of 123.23,24

A rheumatologist often leads diagnosis and treatment of Sjögren's disease.15 Depending on your symptoms, your care team may also include an ophthalmologist or optometrist, dentist, ENT specialist, dermatologist, or primary care provider.15

Visit SJÖUT for Sjögren's for disease education, tips for navigating daily life, guidance for talking with your doctor, and stories from people in the Sjögren's community.

  1. Brito-Zerón P, Baldini C, Bootsma H, et al. Sjögren syndrome. Nat Rev Dis Primers. 2016;2:16047. doi:10.1038/nrdp.2016.47 
  2. Ramos-Casals M, Brito-Zerón P, Bombardieri S, et al. EULAR recommendations for the management of Sjögren’s syndrome with topical and systemic therapies. Ann Rheum Dis. 2020;79:3-18. doi:10.1136/annrheumdis-2019-216114 

  3. Thalayasingam N, Baldwin K, Judd C, Ng WF. New developments in Sjögren’s syndrome. Rheumatology (Oxford). 2021;60(suppl 6):vi53-vi61. doi:10.1093/rheumatology/keab466

  4. Kassan SS, Moutsopoulos HM. Clinical manifestations and early diagnosis of Sjögren syndrome. Arch Intern Med. 2004;164(12):1275-1284. doi:10.1001/archinte.164.12.1275

  5. McCoy SS, Woodham M, Bunya VY, et al. A comprehensive overview of living with Sjögren’s: results of a National Sjögren’s Foundation survey. Clin Rheumatol. 2022;41(7):2071-2078. https://doi.org/10.1007/s10067-022-06119-w 

  6. Perella C, Steenackers M, Robbins B, et al. Patient experience of Sjögren’s disease and its multifaceted impact on patients’ lives. Rheumatol Ther. 2023;10:601-614. doi:10.1007/s40744-023-00531-7 

  7. McCoy SS, Bartels CM, Saldanha IJ, et al. National Sjögren's Foundation survey: burden of oral and systemic involvement on quality of life. J Rheumatol. 2021;48(7):1029-1036. doi:10.3899/jrheum.200733 

  8. Meng Q, Ma J, Cui J, et al. Subpopulation dynamics of T and B lymphocytes in Sjögren’s syndrome: Implications for disease activity and treatment. Front Immunol. 2024;15:1468469. doi:10.3389/fimmu.2024.1468469 

  9. National Academies of Sciences, Engineering, and Medicine. Sjögren's Disease/Syndrome. In: Selected Immune Disorders and Disability. Washington, DC: The National Academies Press; 2022. https://www.ncbi.nlm.nih.gov/books/NBK584486/ 

  10. Negrini S, Emmi G, Greco M, Borro M, et al. Sjögren's syndrome: a systemic autoimmune disease. Clin Exp Med. 2022;22(1):9-25. doi:10.1007/s10238-021-00728-6 

  11. Sjögren’s Foundation. Living with Sjögren’s summary of patient survey. 2022.

  12. Rebel D, Paap D, Arends S, et al. Sexual experience and functioning in male and female patients with Sjögren's disease: a qualitative study. RMD Open. 2025;11:e004990. https://doi.org/10.1136/rmdopen-2024-004990 

  13. Brito-Zerón P, et al. Mortality risk factors in primary Sjögren syndrome: a real-world, retrospective, cohort study. eClinicalMedicine. 2023;61:102062. doi:10.1016/j.eclinm.2023.102062

  14. Sjögren's Foundation. Understanding Sjögren's / Diagnosis. Accessed September 25, 2026. https://sjogrens.org/understanding-sjogrens/diagnosis 

  15. Sjögren’s Foundation. What is Sjögren’s? Accessed September 25, 2026. https://sjogrens.org/sites/default/files/inline-files/Final_WhatisSjogrens-Brochure-DoubleGate-15.438x9-OCT2021.pdf 

  16. Sjögren's Foundation. Frequently Asked Questions. Accessed September 25, 2026. https://sjogrens.org/understanding-sjogrens/frequently-asked-questions 

  17. McCoy SS, Woodham M, Bunya VY, et al. A comprehensive overview of living with Sjögren’s: results of a National Sjögren’s Foundation survey. Clin Rheumatol. 2022;41:2071-2078. doi:10.1007/s10067-022-06119-w 

  18. Both T, Dalm VA, van Hagen PM, et al. Reviewing primary Sjögren's syndrome: beyond the dryness. Int J Med Sci. 2017;14(3):191-200. doi:10.7150/ijms.17718

  19. Tromby F, Menfre V, Chatzis LG, et al. Clinical manifestations, imaging and treatment of Sjögren's disease: one year in review 2024. Clin Exp Rheumatol. 2024;42(12):2322-2335. doi:10.55563/clinexprheumatol/5xq3fb 

  20. Lackner A, Ficjan A, Stradner MH, et al. It’s more than dryness and fatigue: the patient perspective on health-related quality of life in primary Sjögren’s syndrome – a qualitative study. PLoS ONE. 2017;12(2): e0172056. doi:10.1371/journal.pone.0172056 

  21. Alberts B, Johnson A, Lewis J, et al. B cells and antibodies. Molecular Biology of the Cell. 2002;4. https://www.ncbi.nlm.nih.gov/books/NBK26884/ 

  22. Sjögren's Foundation. Sjögren's disease signs & symptoms. Accessed September 25, 2026. https://sjogrens.org/understanding-sjogrens/sjogrens-disease-signs-and-symptoms 

  23. Seror R, Bowman SJ, Brito-Zerón P, et al. EULAR Sjögren's syndrome disease activity index (ESSDAI): a user guide. RMD Open. 2015;1:e000022. https://doi.org/10.1136/rmdopen-2014-000022 

  24. Seror R, Ravaud P, Bowman SJ, et al. EULAR Sjögren's syndrome disease activity index: development of a consensus systemic disease activity index for primary Sjögren's syndrome. Ann Rheum Dis. 2010;69(6):1103-1109. doi:10.1136/ard.2009.110619