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Unmasked: an insight into three patients’ rare disease experiences during the COVID-19 pandemic

Authors
  • Chaplin, Catriona1
  • 1 Barts and the London School of Medicine and Dentistry, Turner St, Whitechapel, London, E1 2AD, UK , London (United Kingdom)
Type
Published Article
Journal
Orphanet Journal of Rare Diseases
Publisher
Springer (Biomed Central Ltd.)
Publication Date
Feb 26, 2021
Volume
16
Issue
1
Identifiers
DOI: 10.1186/s13023-021-01734-3
Source
Springer Nature
Keywords
License
Green

Abstract

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.

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