Patient Perspectives: Patient as Teacher: The Impact of Listening to a Patient With Stiff-Person Syndrome on Her Disease Course.

Abstract

We highlight a memorable encounter with a patient who provided us with insight into her diagnosis of stiff-person syndrome (SPS) by helping us understand what it means to truly live with this rare disease. By actively imagining ourselves in a patient's position and trying to learn who they are as individuals, we can help them share their stories, empower them to participate in decisions, and determine their own definitions of successful outcomes. In our patient's case, she ultimately felt empowered to serve as a public advocate and spread greater awareness and deeper understanding of this rare disease. In this case-based narrative, we highlight key educational teaching points of SPS, including important symptoms, treatments, comorbidities, laboratory findings, and related electromyography results. We also compare the physician and patient perspectives to remind trainees to keep in mind the person behind every diagnosis. Small gestures of compassion such as creating space in clinic to listen to a patient's story can lead to stronger patient-physician therapeutic alliances and improved quality of life.