{"title":"Patrick de Smet: Why change a winning team?","authors":"N. Uitslager","doi":"10.17225/JHP00134","DOIUrl":null,"url":null,"abstract":"F orty years living with haemophilia on two different continents has left Patrick de Smet with a unique perspective on his condition. He has experienced haemophilia the hard way but has no hard feelings. While he accepts that haemophilia care has advanced tremendously in recent years, he is happy with the treatments he knows, and with his decision that “with me the haemophilia stops.” Today, Patrick de Smet is well known as the (head) coordinator of the Belgian Haemophilia Society (Hemofilievereniging / Association de l’Hémophilie). He spends his time campaigning to raise awareness of the condition he has lived with for over four decades, explaining what it is like to live with haemophilia, how it changes over time, and why it is something to be managed rather than to be afraid of.","PeriodicalId":372940,"journal":{"name":"The Journal of Haemophilia Practice","volume":"112 1","pages":"0"},"PeriodicalIF":0.0000,"publicationDate":"2019-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"1","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"The Journal of Haemophilia Practice","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.17225/JHP00134","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
引用次数: 1
Abstract
F orty years living with haemophilia on two different continents has left Patrick de Smet with a unique perspective on his condition. He has experienced haemophilia the hard way but has no hard feelings. While he accepts that haemophilia care has advanced tremendously in recent years, he is happy with the treatments he knows, and with his decision that “with me the haemophilia stops.” Today, Patrick de Smet is well known as the (head) coordinator of the Belgian Haemophilia Society (Hemofilievereniging / Association de l’Hémophilie). He spends his time campaigning to raise awareness of the condition he has lived with for over four decades, explaining what it is like to live with haemophilia, how it changes over time, and why it is something to be managed rather than to be afraid of.
在两个不同的大洲与血友病生活了40年，这让帕特里克·德·斯迈特对自己的病情有了独特的看法。他经历了血友病的痛苦，但没有任何难受的感觉。虽然他承认近年来血友病治疗取得了巨大进步，但他对自己所知道的治疗方法感到满意，并对自己的决定感到满意，即“血友病在我身上停止了”。今天，帕特里克·德·斯梅特作为比利时血友病协会(Hemofilievereniging / Association de l ' h2013.mophilie)的首席协调员而闻名。他花时间开展活动，提高人们对与他一起生活了40多年的血友病的认识，解释患有血友病是什么感觉，它是如何随着时间的推移而变化的，以及为什么它是一种需要控制而不是害怕的疾病。
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