Suppr超能文献

《揭开面具:了解 COVID-19 大流行期间三位罕见病患者的经历》

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

机构信息

Barts and the London School of Medicine and Dentistry, Turner St, Whitechapel, London, E1 2AD, UK.

出版信息

Orphanet J Rare Dis. 2021 Feb 26;16(1):88. doi: 10.1186/s13023-021-01734-3.

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.

摘要

这篇文章描述了我与三位患有肥大细胞增多症的患者及其家属交谈的感想,我是通过英国肥大细胞增多症支持小组认识他们的。我讨论了这种疾病如何影响他们的日常生活,以及在新冠疫情期间这种影响是如何变化的。我试图深入了解该患者群体在疫情期间和之前所面临的特殊困难,同时也考虑了这些挑战在更广泛的罕见病患者群体中可能产生共鸣的方式。全文使用化名以保护患者隐私。

相似文献

2
[Mastocytosis and pregnancy].[肥大细胞增多症与妊娠]
J Gynecol Obstet Biol Reprod (Paris). 2013 Apr;42(2):117-22. doi: 10.1016/j.jgyn.2011.11.010. Epub 2012 Mar 27.
9
10
Impact of COVID-19 pandemic on patients with rare disease in Hong Kong.新冠疫情对香港罕见病患者的影响。
Eur J Med Genet. 2020 Dec;63(12):104062. doi: 10.1016/j.ejmg.2020.104062. Epub 2020 Sep 12.

本文引用的文献

2
5
Patient Perceptions in Mast Cell Disorders.肥大细胞疾病中的患者认知
Immunol Allergy Clin North Am. 2018 Aug;38(3):505-525. doi: 10.1016/j.iac.2018.04.006.
6
Epidemiology, prognosis, and risk factors in mastocytosis.肥大细胞增多症的流行病学、预后和危险因素。
Immunol Allergy Clin North Am. 2014 May;34(2):283-95. doi: 10.1016/j.iac.2014.01.003.
7
The Mastocytosis Society survey on mast cell disorders: patient experiences and perceptions.肥大细胞疾病调查:患者的体验和看法。
J Allergy Clin Immunol Pract. 2014 Jan-Feb;2(1):70-6. doi: 10.1016/j.jaip.2013.09.004. Epub 2013 Dec 3.
8
Mastocytosis.肥大细胞增多症。
Immunol Allergy Clin North Am. 2014 Feb;34(1):181-96. doi: 10.1016/j.iac.2013.09.001. Epub 2013 Oct 7.

文献检索

告别复杂PubMed语法,用中文像聊天一样搜索,搜遍4000万医学文献。AI智能推荐,让科研检索更轻松。

立即免费搜索

文件翻译

保留排版,准确专业,支持PDF/Word/PPT等文件格式,支持 12+语言互译。

免费翻译文档

深度研究

AI帮你快速写综述,25分钟生成高质量综述,智能提取关键信息,辅助科研写作。

立即免费体验