Sjögren Europe launches ‘Nobody Listens’ campaign for World Sjögren’s Day

Ahead of World Sjögren’s Day on July 23, Sjögren Europe is using its Europe-wide ‘Nobody Listens’ campaign to push for earlier diagnosis and better support for people with Sjögren disease. The effort spotlights invisible symptoms, long diagnostic delays and the daily toll the autoimmune condition can take on health, work and family life.

Why it matters: - Sjögren disease is often invisible, but its impact can be severe, long-lasting and disabling. - Sjögren Europe says earlier recognition can help patients get appropriate care sooner and may reduce irreversible damage. - The campaign also seeks broader changes in healthcare, workplaces and public understanding.

What happened: - Sjögren Europe launched its Europe-wide “Nobody Listens” campaign ahead of World Sjögren’s Day on 23 July. - The campaign runs throughout July and continues until 31 July. - The effort centers on patient experiences that describe disbelief, dismissal and under-recognition of symptoms. - Sjögren Europe is sharing the campaign under #NobodyListens and #WorldSjogrensDay.

The details: - Sjögren disease is a chronic autoimmune condition in which the immune system attacks the body’s moisture-producing glands and may also affect other organs and systems. - The condition is commonly linked to dry eyes and dry mouth, but patients can also experience debilitating fatigue, joint and muscle pain, nerve pain, dysautonomia and cognitive difficulties often described as “brain fog.” - In some cases, the lungs, kidneys, nervous system or lymphatic system may be involved, with a serious increased risk of lymphoma. - The disease disproportionately affects women, who account for approximately nine in ten diagnosed cases. - Diagnosis can take several years. - The 2026 international patient study Spotlight on Sjögren’s: A Patient Perspective on Burden of Disease found that most participants had symptoms for more than five years before diagnosis, with even longer delays in some countries. - Patient testimonies in the campaign use ordinary phrases such as “my belly hurts” and “I’m just tired” to show how everyday language can hide the scale of the illness. - Sjögren Europe said pain, fatigue, cognitive problems and wider effects on employment, family responsibilities, social life, mental wellbeing and financial security are often not recognized. - The organization also said people living with Sjögren disease are too often not believed by those around them and by healthcare professionals.

Between the lines: - The campaign is as much about recognition as it is about treatment. - Sjögren Europe is framing listening as a clinical issue, not just a social one, because missed symptoms can delay diagnosis and care. - The message also broadens responsibility beyond doctors to employers, families, friends, policymakers and health systems. - Sjögren Europe says the disease remains without a single approved treatment, and available therapeutic approaches are palliative.

What's next: - Sjögren Europe and its national member associations will continue sharing patient testimonies, campaign messages and awareness materials through the end of July. - The group is urging healthcare professionals to listen carefully to patient-reported symptoms and recognize the systemic nature of the disease. - It is asking policymakers and health systems to acknowledge the full impact of Sjögren disease and work toward effective treatment approval. - Employers are being urged to support workers living with fluctuating and invisible symptoms. - Families, friends and the public are being asked to believe patients when they describe the impact of the illness.

The bottom line: - Sjögren Europe wants World Sjögren’s Day to push Sjögren disease out of the shadows and into earlier diagnosis, better support and more serious medical attention.