Sjögren Europe pushes visibility for invisible symptoms ahead of World Sjögren’s Day

Sjögren Europe is using its July “Nobody Listens” campaign to spotlight the often missed symptoms and long diagnosis delays tied to Sjögren disease ahead of World Sjögren’s Day on 23 July. The group says earlier recognition, better listening from clinicians and stronger support from employers and policymakers are needed to reduce harm from the disease.

Why it matters: - Sjögren disease can be disabling long before patients receive a diagnosis, and delays can leave symptoms untreated for years. - The campaign centers on the real-world impact of an invisible disease on work, family life, mental wellbeing and financial security. - Earlier recognition can help avoid irreversible damage and improve access to support.

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. - Sjögren Europe is sharing patient testimonies and awareness materials under the hashtags #NobodyListens and #WorldSjogrensDay. - The group is asking the public to recognize the daily impact of Sjögren disease and take patient experiences seriously.

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 disease is commonly linked to dry eyes and dry mouth, but symptoms can also include debilitating fatigue, joint and muscle pain, nerve pain, dysautonomia and cognitive difficulties often described as brain fog. - Dryness can affect different parts of the body, not just the eyes and mouth. - In some cases, the lungs, kidneys, nervous system or lymphatic system may be involved, with a serious increased risk of lymphoma. - Women account for about nine in 10 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. - The campaign uses patient testimonies and simple phrases such as “my belly hurts” and “I’m just tired” to show how everyday language can hide the severity of the illness.

Between the lines: - Sjögren Europe is arguing that disbelief is part of the burden of the disease, not just a communication problem. - The group is also framing listening as a clinical issue, since missed or minimized symptoms can slow diagnosis and delay care. - The message to policymakers and health systems goes beyond awareness and points to treatment access, employment protection and social support. - The lack of a single approved treatment leaves current therapeutic approaches palliative.

What's next: - Sjögren Europe wants healthcare professionals to listen more carefully to patient-reported symptoms and recognize the systemic nature of the disease. - The group is urging policymakers and health systems to address the broader effects of the disease and help secure effective treatment approval. - Employers are being asked to better support people with fluctuating and invisible symptoms. - Families, friends and the wider public are being asked to believe people when they describe how the disease affects them. - Sjögren Europe and its national member associations will continue sharing campaign messages and patient stories through the end of July.

The bottom line: - Sjögren Europe is using World Sjögren’s Day to turn an awareness campaign into a call for earlier diagnosis, more empathy and practical support for people living with a disease that is often hidden but deeply disruptive.