For these three women, the same disease has taken three very different paths.
Sjögren's disease is often associated with dry eyes and dry mouth. But for many people living with this chronic autoimmune disease, that's only part of the story. Debilitating fatigue that makes it difficult to get through the day. Pain that changes daily routines. Symptoms that affect multiple parts of the body. For some, the search for an answer can take years.
Elaine, Courtney and Rose all live with Sjögren's disease, but their individual journeys with the disease do not look the same. Instead, their experiences reflect the many ways Sjögren's disease can unfold—from the first signs that something feels off, to the long road to diagnosis, to the evolving symptoms that can shape daily life. What unites the three women is a shared determination to advocate for themselves while encouraging others to do the same.
Elaine's Story: When Seemingly Simple Symptoms Reveal Something More
Elaine, a family nurse practitioner, was diagnosed with Sjögren's disease in 2024 after experiencing persistent dry eyes. Working in telemedicine, Elaine saw up to 23 patients a day, but her dry eyes made it difficult to spend hours looking at a screen. She eventually asked her supervisor to reduce her patient schedule. While dry eyes are often brushed off as allergies or changes in weather, Elaine knew this felt different. She saw an allergist-immunologist and a rheumatologist, who diagnosed her with Sjögren's disease.
Although her diagnosis began with dry eyes, Elaine now works with six providers to proactively monitor for potential systemic manifestations and manage different aspects of her disease.
Courtney's Story: A Long Road to Answers
Since the age of four, Courtney has experienced persistent fatigue, dryness, pain and other unexplained symptoms. As a student, her fatigue was so severe that she often went home during the school day to nap.
Over time, Courtney's symptoms expanded to include joint pain, skin issues and gynecological complications. Despite years of consulting specialists, her test results repeatedly came back “normal.”
For years, Courtney lived with the burden of symptoms that had no diagnosis. Three decades after her symptoms began, she was finally diagnosed with Sjögren's disease.
Rose's Story: When Symptoms Evolve Over Time
Rose, a retired clinical researcher, was diagnosed with Sjögren's disease after a routine physical prompted additional testing. She received her diagnosis before experiencing any noticeable symptoms. Over time, she began experiencing dry eyes and mouth, joint pain, gastrointestinal complications, shortness of breath and nerve pain.
Today, her Sjögren's disease affects her gastrointestinal tract and her lungs, and Rose's care team includes specialists across rheumatology, ophthalmology, neurology and pulmonology to manage her disease.
Beyond Dryness: Understanding the Full Impact of Sjögren's Disease
Together, these stories highlight that Sjögren's disease cannot be defined by a single symptom or a single patient experience. Symptoms, diagnosis journeys and disease progression can vary widely, yet many people share the challenges of living with a chronic autoimmune disease that extends far beyond dryness.
These experiences reflect what broader patient research continues to show. A recent Sjögren's Foundation survey of 6,360 people living with Sjögren's disease found that, based on patients' self-reported experiences, fatigue, joint pain and neuropathy are among the symptoms that have the greatest impact on patients' daily lives.
“For too long, Sjögren's has been misunderstood as a disease primarily defined by dryness. What these data make clear is that patients are dealing with far more than dryness alone; they are navigating overwhelming fatigue, challenges like joint and muscle pain, and a range of symptoms that affect nearly every part of their lives,” said Janet Church, president and CEO, Sjögren's Foundation.
By listening to patients and working alongside advocacy organizations, healthcare professionals and the broader Sjögren's community, Amgen is committed to helping advance understanding of Sjögren's disease and the experiences of those living with it.
To learn more about Sjögren's disease, and the Sjögren's Foundation, visit sjogrens.org.
