Findings highlight relentless symptoms, notable quality of life impact, and the need for greater awareness during Sjögren's Awareness Month (April)

RESTON, VA / ACCESS Newswire / April 16, 2026 / Today, the Sjögren's Foundation released new findings from its most recent Living with Sjögren's® patient survey, offering the most comprehensive look to date at self-reported experiences of people living with Sjögren's disease. The findings show that Sjögren's disease goes far beyond dryness, with relentless, wide-ranging symptoms that notably impact daily life, work, and overall well-being.

The survey, conducted online by the Sjögren's Foundation, includes responses from 6,360 adults in the United States living with Sjögren's disease.

"For too long, Sjögren's has been misunderstood as a disease primarily defined by dryness," said Janet Church, President and CEO of the Sjögren's Foundation and a person living with Sjögren's. "What these data make clear is that patients are dealing with far more than dryness alone; they are navigating overwhelming fatigue, challenges like brain fog, joint and muscle pain, trouble sleeping, and a range of symptoms that affect nearly every part of their lives."

Sjögren's is a Relentless, Daily Disease

The survey highlights the relentless nature of Sjögren's disease. More than 60% of respondents reported experiencing the most common symptoms every day or every week, reinforcing that Sjögren's is not an occasional condition, but a persistent one that requires ongoing management.

Fatigue emerged as one of the most notable and disruptive symptoms, as nearly all respondents who reported fatigue also reported that it had a major or moderate impact on their lives (89%). When asked which single symptom had the greatest negative impact, fatigue also ranked highest among respondents.

Beyond fatigue, patients reported a wide range of symptoms, including joint pain (81%), brain fog (77%), and trouble sleeping (73%), underscoring that many of the most common symptoms of the disease are not related to dryness.

"Sjögren's is a daily disease that is relentless," Church added. "It affects a person's ability to function, to work, to maintain relationships, and to participate in everyday life. The effect of these symptoms can be overwhelming and can change how someone is able to live the quality of life they deserve."

Impact on Daily Life, Work, and Relationships

The findings show that Sjögren's disease seriously disrupts daily life:

Daily Life and Work

81% of respondents agreed, "My Sjögren's gets in the way of the things I need to do each day."

72% report difficulty completing everyday tasks such as cooking, cleaning, and getting dressed

57% of respondents reported their job/career or ability to work was negatively impacted by Sjögren's

Relationships and Social Life

Respondents reported that their Sjögren's has negatively impacted their relationship with their spouse/partner (59%) and with family members (67%)

Nearly half (49%) of respondents agreed, "I feel lonely because of my Sjögren's."

64% of respondents reported a negative impact to their sex life

Mental Health and Emotional Burden

86% of respondents agreed, "Living with Sjögren's adds an emotional burden to my life."

52% of respondents reported having been diagnosed with anxiety by a healthcare provider

47% of respondents reported having been diagnosed with depression by a healthcare provider

Additionally, two-thirds of respondents reported having been diagnosed with at least one additional autoimmune condition. In addition to these co-occurring conditions, findings also show that Sjögren's disease affects multiple body systems, highlighting the complexity of care and the need for coordinated, multidisciplinary management.

Visit www.sjogrens.org/survey to download the full executive summary and to explore more insights from the Living with Sjögren's® patient survey.

Connecting Data to Real Lived Experiences During Sjögren's Awareness Month

The release of the Living with Sjögren's® patient survey coincides with Sjögren's Awareness Month in April, a national effort to increase understanding of the disease and amplify the voices of those living with Sjögren's disease.

Throughout each day of April, the Sjögren's Foundation is sharing patient stories that reflect the real experiences behind the data. Together, these stories and survey findings aim to provide a more complete picture of Sjögren's disease and its impact. Read stories here: https://sjogrens.org/awareness-stories

"These findings validate what people living with Sjögren's have been saying for years," said Church. "By pairing these data with real patient stories during Sjögren's Awareness Month, we have an opportunity to deepen understanding, spark important conversations, and ensure that people living with Sjögren's are seen, heard, and supported."

About the Living with Sjögren's® Patient Survey

The 2025 Living with Sjögren's survey was conducted in the United States using an online instrument administered by The Harris Poll on behalf of the Sjögren's Foundation. The online survey instrument received Institutional Review Board (IRB) approval before it was launched and was open to adults aged 18 years or older with a diagnosis of Sjögren's disease. Data collection occurred between August 7 and September 4, 2025. A total of 6,360 completed responses were received.

Respondents (N=6,360) ranged in age from 18-98 years old and were predominantly female (95%) and white (85%). Nearly half (49%) of respondents were age 65 or older whereas 5.9% were under the age of 40.

About the Sjögren's Foundation

The Sjögren's Foundation is the only non-profit organization focused on increasing research, education, and awareness for Sjögren's, one of the most prevalent autoimmune disorders, affecting as many as 4 million Americans, with an estimated 2.5 million patients currently undiagnosed. For more information, visit www.sjogrens.org.

Contact Information

Christopher Shinbur-Copley, MA
Vice President, Marketing & Communications
ccopley@sjogrens.org
(571) 496-2025

SOURCE: Sjögren's Foundation