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 spotlight how often Sjögren disease symptoms are dismissed or misunderstood. The group says earlier diagnosis, better support and greater recognition of invisible symptoms are needed to reduce harm for patients across Europe.

Why it matters: - Sjögren disease can affect more than dry eyes and dry mouth. It can also drive fatigue, pain, cognitive problems, organ involvement and long-term damage. - Delays in recognition can slow diagnosis and leave people without support for work, family life, mental health and finances. - The campaign is pushing healthcare systems to treat patient-reported symptoms as clinically important, not optional.

What happened: - Sjögren Europe launched its Europe-wide “Nobody Listens” campaign ahead of World Sjögren’s Day on July 23. - The campaign runs throughout July and continues until July 31. - Sjögren Europe says the effort is designed to show the lived experience of people with Sjögren disease and the disbelief many face. - The group is using the hashtags #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. - Common symptoms include dry eyes, dry mouth, debilitating fatigue, joint and muscle pain, nerve pain, dysautonomia, cognitive difficulties often described as brain fog, and dryness in other parts of the body. - The disease can also involve the lungs, kidneys, nervous system or lymphatic system. - Sjögren disease carries an increased risk of lymphoma in some cases. - 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. - Some countries reported even longer delays. - The campaign uses patient testimonies and simple phrases such as “my belly hurts” and “I’m just tired” to show how serious symptoms can be hidden in everyday language.

Between the lines: - The campaign is also a response to a communication gap. Sjögren Europe says invisible symptoms are often minimized by people around patients and by healthcare professionals. - The group is framing listening as the first step toward recognition, appropriate care and meaningful support. - It is also pressing for an effective treatment to be approved. So far, there is no single approved treatment for Sjögren disease, and current therapeutic approaches are palliative. - The messaging suggests the disease burden extends beyond medicine into employment, family responsibilities and social participation.

What’s next: - Sjögren Europe and its national member associations will continue sharing patient testimonies, campaign messages and awareness materials through July 31. - 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 address the full impact of Sjögren disease and support earlier diagnosis. - Employers, families, friends and the wider public are being asked to believe people when they describe the impact of the illness.

The bottom line: - Sjögren Europe wants World Sjögren’s Day to shift Sjögren disease from an invisible illness to a recognized, supported and sooner-diagnosed condition.