{"id":1057,"date":"2013-09-10T16:37:36","date_gmt":"2013-09-10T14:37:36","guid":{"rendered":"https:\/\/www.aica3.org\/cms\/?p=1057"},"modified":"2022-01-06T10:10:00","modified_gmt":"2022-01-06T09:10:00","slug":"vivere-con-la-distrofia-muscolare-riflessioni-personali","status":"publish","type":"post","link":"https:\/\/www.aica3.org\/cms\/en\/vivere-con-la-distrofia-muscolare-riflessioni-personali\/","title":{"rendered":"Living with muscular dystrophy: Personal reflections"},"content":{"rendered":"<div title=\"Pagina 1\">\n<div>\n<div>\n<p>With the growing interest in day-to-day measures of value to patients, it may be of help to understand what goes through the minds of those who live with dystrophy every day. We don\u2019t think about 6MWT or the density on an MRI. It is much more practical than that. It is falling, broken bones, struggling to breathe, watch- ing one ability after another vanish. As a scientist, I think in equa- tions, models, variables, and predictability. I want to, and can, describe dystrophy in this sort of sterile way. I do think about dys- trophy that way. But, I feel it very differently as I watch one muscle after the other decay and vanish.<\/p>\n<p><a href=\"https:\/\/www.aica3.org\/cms\/wp-content\/uploads\/2013\/09\/Living-with-muscular-dystrophy-Personal-reflections.pdf\">Living with muscular dystrophy: Personal reflections<\/a><\/p>\n<\/div><\/div>\n<\/p><\/div>\n<\/p><\/div>","protected":false},"excerpt":{"rendered":"<p>Con il crescente interesse per le misure quotidiane di valore per i pazienti, pu\u00f2 essere d&#8217;aiuto capire cosa passa nella mente di chi vive con la distrofia ogni giorno. Non pensiamo al 6MWT o alla densit\u00e0 su una risonanza magnetica. \u00c8 molto pi\u00f9 pratico di questo. Si tratta di cadute, ossa rotte, lotta per respirare, [&hellip;]<\/p>\n","protected":false},"author":4,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":""},"categories":[34,33],"tags":[],"class_list":["post-1057","post","type-post","status-publish","format-standard","hentry","category-articoli-scientifici","category-ricerca-e-pubblicazioni"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Vivere con la distrofia muscolare: Riflessioni personali - AICa3 - ETS - Associazione Italiana Calpaina 3<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.aica3.org\/cms\/en\/vivere-con-la-distrofia-muscolare-riflessioni-personali\/\" \/>\n<meta property=\"og:locale\" content=\"en_GB\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Vivere con la distrofia muscolare: Riflessioni personali - AICa3 - ETS - Associazione Italiana Calpaina 3\" \/>\n<meta property=\"og:description\" content=\"Con il crescente interesse per le misure quotidiane di valore per i pazienti, pu\u00f2 essere d&#8217;aiuto capire cosa passa nella mente di chi vive con la distrofia ogni giorno. Non pensiamo al 6MWT o alla densit\u00e0 su una risonanza magnetica. \u00c8 molto pi\u00f9 pratico di questo. 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