Aaron S Zelikovich, Barbara Zamorska, Nara Miriam Michaelson
{"title":"患者视角:病人是老师:倾听僵人综合症患者的心声对其病程的影响。","authors":"Aaron S Zelikovich, Barbara Zamorska, Nara Miriam Michaelson","doi":"10.1212/WNL.0000000000213433","DOIUrl":null,"url":null,"abstract":"<p><p>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.</p>","PeriodicalId":19256,"journal":{"name":"Neurology","volume":"104 8","pages":"e213433"},"PeriodicalIF":7.7000,"publicationDate":"2025-04-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Patient Perspectives: Patient as Teacher: The Impact of Listening to a Patient With Stiff-Person Syndrome on Her Disease Course.\",\"authors\":\"Aaron S Zelikovich, Barbara Zamorska, Nara Miriam Michaelson\",\"doi\":\"10.1212/WNL.0000000000213433\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>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.</p>\",\"PeriodicalId\":19256,\"journal\":{\"name\":\"Neurology\",\"volume\":\"104 8\",\"pages\":\"e213433\"},\"PeriodicalIF\":7.7000,\"publicationDate\":\"2025-04-22\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Neurology\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1212/WNL.0000000000213433\",\"RegionNum\":1,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2025/3/19 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q1\",\"JCRName\":\"CLINICAL NEUROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Neurology","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1212/WNL.0000000000213433","RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2025/3/19 0:00:00","PubModel":"Epub","JCR":"Q1","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
Patient Perspectives: Patient as Teacher: The Impact of Listening to a Patient With Stiff-Person Syndrome on Her Disease Course.
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.
期刊介绍:
Neurology, the official journal of the American Academy of Neurology, aspires to be the premier peer-reviewed journal for clinical neurology research. Its mission is to publish exceptional peer-reviewed original research articles, editorials, and reviews to improve patient care, education, clinical research, and professionalism in neurology.
As the leading clinical neurology journal worldwide, Neurology targets physicians specializing in nervous system diseases and conditions. It aims to advance the field by presenting new basic and clinical research that influences neurological practice. The journal is a leading source of cutting-edge, peer-reviewed information for the neurology community worldwide. Editorial content includes Research, Clinical/Scientific Notes, Views, Historical Neurology, NeuroImages, Humanities, Letters, and position papers from the American Academy of Neurology. The online version is considered the definitive version, encompassing all available content.
Neurology is indexed in prestigious databases such as MEDLINE/PubMed, Embase, Scopus, Biological Abstracts®, PsycINFO®, Current Contents®, Web of Science®, CrossRef, and Google Scholar.