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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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Formato: | Online Artículo Texto |
Lenguaje: | English |
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IOS Press
2022
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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. |
collection | PubMed |
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. |
format | Online Article Text |
id | pubmed-9837684 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | IOS Press |
record_format | MEDLINE/PubMed |
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 |
work_keys_str_mv | AT serbinkennethp strivingforarealisticandunapologeticviewofhuntingtonsdisease |