Barts and the London School of Medicine and Dentistry, Turner St, Whitechapel, London, E1 2AD, UK.
Orphanet J Rare Dis. 2021 Feb 26;16(1):88. doi: 10.1186/s13023-021-01734-3.
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.
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。