{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,11,9]],"date-time":"2025-11-09T03:47:35Z","timestamp":1762660055454,"version":"3.37.3"},"reference-count":14,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2021,2,26]],"date-time":"2021-02-26T00:00:00Z","timestamp":1614297600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2021,2,26]],"date-time":"2021-02-26T00:00:00Z","timestamp":1614297600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Orphanet J Rare Dis"],"published-print":{"date-parts":[[2021,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>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.<\/jats:p>","DOI":"10.1186\/s13023-021-01734-3","type":"journal-article","created":{"date-parts":[[2021,2,26]],"date-time":"2021-02-26T01:03:02Z","timestamp":1614301382000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":9,"title":["Unmasked: an insight into three patients\u2019 rare disease experiences during the COVID-19 pandemic"],"prefix":"10.1186","volume":"16","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8401-719X","authenticated-orcid":false,"given":"Catriona","family":"Chaplin","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2021,2,26]]},"reference":[{"issue":"2","key":"1734_CR1","doi-asserted-by":"publisher","first-page":"283","DOI":"10.1016\/j.iac.2014.01.003","volume":"34","author":"K Brockow","year":"2014","unstructured":"Brockow K. Epidemiology, prognosis, and risk factors in mastocytosis. Immunol Allergy Clin N Am. 2014;34(2):283\u201395.","journal-title":"Immunol Allergy Clin N Am"},{"issue":"1","key":"1734_CR2","doi-asserted-by":"publisher","first-page":"181","DOI":"10.1016\/j.iac.2013.09.001","volume":"34","author":"MC Carter","year":"2014","unstructured":"Carter MC, Metcalfe DD, Komarow HD. Mastocytosis. Immunol Allergy Clin N Am. 2014;34(1):181\u201396.","journal-title":"Immunol Allergy Clin N Am"},{"issue":"3","key":"1734_CR3","doi-asserted-by":"publisher","first-page":"505","DOI":"10.1016\/j.iac.2018.04.006","volume":"38","author":"SV Jennings","year":"2018","unstructured":"Jennings SV, Slee VM, Zack RM, Verstovsek S, George TI, Shi H, et al. Patient perceptions in mast cell disorders. Immunol Allergy Clin N Am. 2018;38(3):505\u201325.","journal-title":"Immunol Allergy Clin N Am"},{"key":"1734_CR4","unstructured":"Rare Disease UK. 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Accessed 14 Nov 2020."}],"container-title":["Orphanet Journal of Rare Diseases"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1186\/s13023-021-01734-3.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/article\/10.1186\/s13023-021-01734-3\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1186\/s13023-021-01734-3.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,2,26]],"date-time":"2021-02-26T01:03:30Z","timestamp":1614301410000},"score":1,"resource":{"primary":{"URL":"https:\/\/ojrd.biomedcentral.com\/articles\/10.1186\/s13023-021-01734-3"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2021,2,26]]},"references-count":14,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2021,12]]}},"alternative-id":["1734"],"URL":"https:\/\/doi.org\/10.1186\/s13023-021-01734-3","relation":{},"ISSN":["1750-1172"],"issn-type":[{"type":"electronic","value":"1750-1172"}],"subject":[],"published":{"date-parts":[[2021,2,26]]},"assertion":[{"value":"3 February 2021","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"8 February 2021","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"26 February 2021","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"Consent was obtained from participants to be interviewed and have their information included as part of the article, with names and identifiable information redacted.","order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The author declares that they have no competing interests.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"88"}}