力求对亨廷顿舞蹈症有一个现实的、毫无歉意的看法。

IF 2.1 Q3 NEUROSCIENCES Journal of Huntington's disease Pub Date : 2022-01-01 DOI:10.3233/JHD-220551
Kenneth P Serbin
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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。
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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.

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来源期刊
CiteScore
4.80
自引率
9.70%
发文量
60
期刊最新文献
Changes in 24(S)-Hydroxycholesterol Are Associated with Cognitive Performance in Early Huntington's Disease: Data from the TRACK and ENROLL HD Cohorts. Somatic CAG Repeat Stability in a Transgenic Sheep Model of Huntington's Disease. Mono- and Biallelic Inactivation of Huntingtin Gene in Patient-Specific Induced Pluripotent Stem Cells Reveal HTT Roles in Striatal Development and Neuronal Functions. Alterations in Cerebrospinal Fluid Urea Occur in Late Manifest Huntington's Disease. Characterizing Heart Rate Variability Response to Maximal Exercise Testing in People with Huntington's Disease.
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