Marked annually on the birthday of Dr. Henrik Sjögren who discovered the condition, World Sjögren’s Day is meant to spread awareness and raise funds for Sjögren’s research, education, and advocacy.
Sjögren's syndrome (pronounced "SHOW-grins") is an autoimmune disease that affects the body's ability to produce moisture. It primarily causes dry eyes and dry mouth but can also lead to fatigue, joint pain, and affect other organs.
The Patient Perspective
Living with Sjögren's syndrome involves navigating a range of challenges, from managing physical symptoms like dry eyes and mouth, fatigue, and joint pain, to coping with the emotional and mental impacts of the condition.
Let’s listen to a 31- to 35-year-old woman with Sjögren's describe what it’s like for her to live with this condition and some of the challenges she faces.
Decoding the Patient Voice
Understanding the patient voice is at the heart of what we do at inVibe, which we approach holistically by analyzing what is said, how it’s said, and how it sounds.
Looking first at what she is saying and how, this patient calls attention to the intensity of her experience. She describes living with Sjögren's as similar to normal feelings of dryness but much more extreme. She communicates this point using linguistic intensifiers like “extremely dry,” by focusing on the “sudden” and ‘unbelievable’ cavities that resulted from her symptoms, and via the vivid metaphor of a wrung-out sponge “fighting to get moisture.”
Focusing on how it sounds, she describes her experience with strongly negative emotionality (‘valence’), which emphasizes the frustrations of living with a low-awareness condition and her dissatisfaction with her level of symptom control.
Taken together, this patient’s response suggests a significant unmet need for new treatments for Sjögren's, both that address local symptoms like dry eye or dry mouth and systemic ones that manage the condition and prevent symptoms from being so extreme.
Simple, Systematic, Scalable
Our Listening Platform makes it simple for patients to speak with us about their experiences in an open and authentic way and easy for you to engage with their perspectives directly.
If you’re interested in hearing from more patients like this one so that you can gain insight into their experiences, beliefs, behaviors, and desires, schedule a demo with us today and see for yourself.
