Literature DB >> 33632267

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

Catriona Chaplin1.   

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.

Entities:  

Keywords:  Covid-19; Mastocytosis; Rare disease

Mesh:

Year:  2021        PMID: 33632267      PMCID: PMC7906766          DOI: 10.1186/s13023-021-01734-3

Source DB:  PubMed          Journal:  Orphanet J Rare Dis        ISSN: 1750-1172            Impact factor:   4.123


  8 in total

1.  The Mastocytosis Society survey on mast cell disorders: patient experiences and perceptions.

Authors:  Susan Jennings; Nancy Russell; Blair Jennings; Valerie Slee; Lisa Sterling; Mariana Castells; Peter Valent; Cem Akin
Journal:  J Allergy Clin Immunol Pract       Date:  2013-12-03

Review 2.  Epidemiology, prognosis, and risk factors in mastocytosis.

Authors:  Knut Brockow
Journal:  Immunol Allergy Clin North Am       Date:  2014-05       Impact factor: 3.479

Review 3.  Mastocytosis.

Authors:  Melody C Carter; Dean D Metcalfe; Hirsh D Komarow
Journal:  Immunol Allergy Clin North Am       Date:  2013-10-07       Impact factor: 3.479

Review 4.  Patient Perceptions in Mast Cell Disorders.

Authors:  Susan V Jennings; Valerie M Slee; Rachel M Zack; Srdan Verstovsek; Tracy I George; Hongliang Shi; Philina Lee; Mariana C Castells
Journal:  Immunol Allergy Clin North Am       Date:  2018-08       Impact factor: 3.479

5.  Short and long term impacts of COVID-19 on the pharmaceutical sector.

Authors:  Nayyereh Ayati; Parisa Saiyarsarai; Shekoufeh Nikfar
Journal:  Daru       Date:  2020-07-03       Impact factor: 3.117

6.  Association Between Famotidine Use and COVID-19 Severity in Hong Kong: A Territory-wide Study.

Authors:  Ka Shing Cheung; Ivan F N Hung; Wai K Leung
Journal:  Gastroenterology       Date:  2020-07-16       Impact factor: 22.682

7.  Famotidine use and quantitative symptom tracking for COVID-19 in non-hospitalised patients: a case series.

Authors:  Tobias Janowitz; Eva Gablenz; David Pattinson; Timothy C Wang; Joseph Conigliaro; Kevin Tracey; David Tuveson
Journal:  Gut       Date:  2020-06-04       Impact factor: 23.059

8.  Famotidine Use Is Associated With Improved Clinical Outcomes in Hospitalized COVID-19 Patients: A Propensity Score Matched Retrospective Cohort Study.

Authors:  Daniel E Freedberg; Joseph Conigliaro; Timothy C Wang; Kevin J Tracey; Michael V Callahan; Julian A Abrams
Journal:  Gastroenterology       Date:  2020-05-22       Impact factor: 22.682

  8 in total
  2 in total

1.  What role can decentralized trial designs play to improve rare disease studies?

Authors:  J Moore; N Goodson; P Wicks; J Reites
Journal:  Orphanet J Rare Dis       Date:  2022-06-20       Impact factor: 4.303

2.  Impact of the COVID-19 pandemic on access to the cerliponase alfa managed access agreement in England for CLN2 treatment.

Authors:  Amanda Mortensen; Eva M Raebel; Samantha Wiseman
Journal:  Orphanet J Rare Dis       Date:  2022-01-19       Impact factor: 4.123

  2 in total

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