Newly Diagnosed with Sjögren's: Foundation First-Steps Guide
The Sjögren's Foundation's dedicated newly-diagnosed hub walks you through your first steps after diagnosis, connects you with peer volunteers, and links you to local support groups.
About This Resource
Receiving a diagnosis of Sjögren's disease can be an overwhelming moment — but for many patients it also comes with relief. After months or even years of unexplained symptoms like dry eyes, dry mouth, joint pain, and profound fatigue, having a name for the condition marks a turning point. The Sjögren's Foundation's Newly Diagnosed page is designed specifically for this pivotal moment, giving patients a clear and compassionate entry point into understanding and managing their condition.
The page is built around the foundation's core belief that no one should face an autoimmune disease alone. Patients who visit will find practical guidance on what steps to take right after diagnosis, including how to assemble a multidisciplinary care team (rheumatologist, ophthalmologist, dentist, and more), how to approach conversations with family members and employers, and how to begin tracking symptoms in a meaningful way.
One of the most distinctive features is the Peer Volunteer Program. The Foundation maintains a network of more than 120 Sjögren's patients who volunteer their personal time to talk one-on-one with those who are newly diagnosed. Patients can call the Foundation at 301-530-4420 to be connected with a volunteer who shares a similar background, symptom profile, or life stage. This human connection can be invaluable in those first disorienting weeks.
The Foundation also maintains over 65 active support groups across the United States, and the newly diagnosed page makes it easy to find one nearby. For those without access to in-person groups, online communities and the Foundation's bi-monthly patient publication Conquering Sjögren's offer ongoing education and peer connection. The magazine covers the latest research, treatment updates, lifestyle strategies, and patient stories.
Additional resources linked from this hub include disease overview brochures, information on common Sjögren's-related conditions (such as peripheral neuropathy, Raynaud's phenomenon, and lung involvement), and tips on communicating your diagnosis to others. The page is updated regularly and serves as a reliable, patient-first entry point to the broader ecosystem of Foundation resources. Whether you were diagnosed last week or last year, this hub is worth bookmarking.