{"title":"力求对亨廷顿舞蹈症有一个现实的、毫无歉意的看法。","authors":"Kenneth P Serbin","doi":"10.3233/JHD-220551","DOIUrl":null,"url":null,"abstract":"<p><p>This article describes how the author, a Huntington's disease (HD) gene expansion carrier and long-time advocate, has helped give voice to the HD community through his blog, At Risk for Huntington's Disease. Since 2005, the 321 articles have helped document the new and harrowing experience of living in the gray zone between a genetic test result and disease onset. At Risk for HD has explored major challenges for the HD community, has become a key reference for HD families, and has chronicled the quest to defeat the disease. This article analyzes the blog's thematic impact.</p>","PeriodicalId":16042,"journal":{"name":"Journal of Huntington's disease","volume":"11 4","pages":"369-371"},"PeriodicalIF":2.1000,"publicationDate":"2022-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/e9/43/jhd-11-jhd220551.PMC9837684.pdf","citationCount":"0","resultStr":"{\"title\":\"Striving for a Realistic and Unapologetic View of Huntington's Disease.\",\"authors\":\"Kenneth P Serbin\",\"doi\":\"10.3233/JHD-220551\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>This article describes how the author, a Huntington's disease (HD) gene expansion carrier and long-time advocate, has helped give voice to the HD community through his blog, At Risk for Huntington's Disease. Since 2005, the 321 articles have helped document the new and harrowing experience of living in the gray zone between a genetic test result and disease onset. At Risk for HD has explored major challenges for the HD community, has become a key reference for HD families, and has chronicled the quest to defeat the disease. This article analyzes the blog's thematic impact.</p>\",\"PeriodicalId\":16042,\"journal\":{\"name\":\"Journal of Huntington's disease\",\"volume\":\"11 4\",\"pages\":\"369-371\"},\"PeriodicalIF\":2.1000,\"publicationDate\":\"2022-01-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/e9/43/jhd-11-jhd220551.PMC9837684.pdf\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Huntington's disease\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.3233/JHD-220551\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q3\",\"JCRName\":\"NEUROSCIENCES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Huntington's disease","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.3233/JHD-220551","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"NEUROSCIENCES","Score":null,"Total":0}
引用次数: 0
摘要
这篇文章描述了作者,一个亨廷顿病(HD)基因扩增载体和长期的倡导者,如何通过他的博客,在亨廷顿病的风险,帮助为亨廷顿病社区发声。自2005年以来,321篇文章帮助记录了生活在基因检测结果和疾病发病之间灰色地带的新的痛苦经历。《At Risk for HD》探讨了HD社区面临的主要挑战,已成为HD家庭的重要参考,并记录了人们战胜这种疾病的历程。本文分析了该博客的主题影响。
Striving for a Realistic and Unapologetic View of Huntington's Disease.
This article describes how the author, a Huntington's disease (HD) gene expansion carrier and long-time advocate, has helped give voice to the HD community through his blog, At Risk for Huntington's Disease. Since 2005, the 321 articles have helped document the new and harrowing experience of living in the gray zone between a genetic test result and disease onset. At Risk for HD has explored major challenges for the HD community, has become a key reference for HD families, and has chronicled the quest to defeat the disease. This article analyzes the blog's thematic impact.