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Unmasked: an insight into three patients’ rare disease experiences during the COVID-19 pandemic
This article describes my reflections of speaking with three patients and their families living with mastocytosis, who I was introduced to through the UK Mastocytosis Support Group. I discuss the various ways in which the condition affects their day-to-day lives and how this has changed during the C...
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Formato: | Online Artículo Texto |
Lenguaje: | English |
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BioMed Central
2021
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Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7906766/ https://www.ncbi.nlm.nih.gov/pubmed/33632267 http://dx.doi.org/10.1186/s13023-021-01734-3 |
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author | Chaplin, Catriona |
author_facet | Chaplin, Catriona |
author_sort | Chaplin, Catriona |
collection | PubMed |
description | This article describes my reflections of speaking with three patients and their families living with mastocytosis, who I was introduced to through the UK Mastocytosis Support Group. I discuss the various ways in which the condition affects their day-to-day lives and how this has changed during the Covid-19 pandemic. I have tried to give an insight into the particular difficulties that this patient group faces, both during and before the pandemic, whilst also considering how these challenges may resonate more widely with other patient groups in the rare disease community. Pseudonyms are used throughout to protect patient anonymity. |
format | Online Article Text |
id | pubmed-7906766 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-79067662021-02-26 Unmasked: an insight into three patients’ rare disease experiences during the COVID-19 pandemic Chaplin, Catriona Orphanet J Rare Dis Letter to the Editor This article describes my reflections of speaking with three patients and their families living with mastocytosis, who I was introduced to through the UK Mastocytosis Support Group. I discuss the various ways in which the condition affects their day-to-day lives and how this has changed during the Covid-19 pandemic. I have tried to give an insight into the particular difficulties that this patient group faces, both during and before the pandemic, whilst also considering how these challenges may resonate more widely with other patient groups in the rare disease community. Pseudonyms are used throughout to protect patient anonymity. BioMed Central 2021-02-26 /pmc/articles/PMC7906766/ /pubmed/33632267 http://dx.doi.org/10.1186/s13023-021-01734-3 Text en © The Author(s) 2021 Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
spellingShingle | Letter to the Editor Chaplin, Catriona Unmasked: an insight into three patients’ rare disease experiences during the COVID-19 pandemic |
title | Unmasked: an insight into three patients’ rare disease experiences during the COVID-19 pandemic |
title_full | Unmasked: an insight into three patients’ rare disease experiences during the COVID-19 pandemic |
title_fullStr | Unmasked: an insight into three patients’ rare disease experiences during the COVID-19 pandemic |
title_full_unstemmed | Unmasked: an insight into three patients’ rare disease experiences during the COVID-19 pandemic |
title_short | Unmasked: an insight into three patients’ rare disease experiences during the COVID-19 pandemic |
title_sort | unmasked: an insight into three patients’ rare disease experiences during the covid-19 pandemic |
topic | Letter to the Editor |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7906766/ https://www.ncbi.nlm.nih.gov/pubmed/33632267 http://dx.doi.org/10.1186/s13023-021-01734-3 |
work_keys_str_mv | AT chaplincatriona unmaskedaninsightintothreepatientsrarediseaseexperiencesduringthecovid19pandemic |