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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...

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Detalles Bibliográficos
Autor principal: Serbin, Kenneth P.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: IOS Press 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9837684/
https://www.ncbi.nlm.nih.gov/pubmed/36502336
http://dx.doi.org/10.3233/JHD-220551
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author Serbin, Kenneth P.
author_facet Serbin, Kenneth P.
author_sort Serbin, Kenneth P.
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description 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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spelling pubmed-98376842023-01-30 Striving for a Realistic and Unapologetic View of Huntington’s Disease Serbin, Kenneth P. J Huntingtons Dis Perspective 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. IOS Press 2022-12-16 /pmc/articles/PMC9837684/ /pubmed/36502336 http://dx.doi.org/10.3233/JHD-220551 Text en © 2022 – The authors. Published by IOS Press https://creativecommons.org/licenses/by-nc/4.0/This is an open access article distributed under the terms of the Creative Commons Attribution Non-Commercial (CC BY-NC 4.0) License (https://creativecommons.org/licenses/by-nc/4.0/) , which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Perspective
Serbin, Kenneth P.
Striving for a Realistic and Unapologetic View of Huntington’s Disease
title Striving for a Realistic and Unapologetic View of Huntington’s Disease
title_full Striving for a Realistic and Unapologetic View of Huntington’s Disease
title_fullStr Striving for a Realistic and Unapologetic View of Huntington’s Disease
title_full_unstemmed Striving for a Realistic and Unapologetic View of Huntington’s Disease
title_short Striving for a Realistic and Unapologetic View of Huntington’s Disease
title_sort striving for a realistic and unapologetic view of huntington’s disease
topic Perspective
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9837684/
https://www.ncbi.nlm.nih.gov/pubmed/36502336
http://dx.doi.org/10.3233/JHD-220551
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