{"id":2862,"date":"2019-10-01T20:27:15","date_gmt":"2019-10-02T01:27:15","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2862"},"modified":"2019-10-01T20:27:15","modified_gmt":"2019-10-02T01:27:15","slug":"william","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2019\/10\/01\/william\/","title":{"rendered":"Personne atteinte de LGMD : William"},"content":{"rendered":"<figure class=\"wp-block-image\"><img decoding=\"async\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271024%27%20height%3D%27576%27%20viewBox%3D%270%200%201024%20576%27%3E%3Crect%20width%3D%271024%27%20height%3D%27576%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2019\/10\/LGMD1D-William-1024x576.png\" alt=\"\" class=\"lazyload wp-image-2860\"\/><\/figure>\n\n\n\n<p><strong>LGMD \"Spotlight interview\" (en anglais)<\/strong><\/p>\n\n\n\n<p><strong>Nom<\/strong>:  William&nbsp;\n<strong>L'\u00e2ge<\/strong>:\n62 ans<\/p>\n\n\n\n<p><strong>Pays<\/strong>: \u00c9tats-Unis<\/p>\n\n\n\n<p><strong>LGMD Sous-type<\/strong>:   LGMD D1 li\u00e9e \u00e0 l'ADNJB6 (anciennement LGMD type 1D)<\/p>\n\n\n\n<p><strong>\u00c0 quel \u00e2ge avez-vous \u00e9t\u00e9 diagnostiqu\u00e9 ?<\/strong>:<\/p>\n\n\n\n<p>J'ai \u00e9t\u00e9 diagnostiqu\u00e9e cliniquement \u00e0 l'\u00e2ge de 40 ans et cinq ans plus tard, \u00e0 l'\u00e2ge de 45 ans, j'ai re\u00e7u la confirmation g\u00e9n\u00e9tique de mon diagnostic de LGMD 1D.<\/p>\n\n\n\n<p><strong>Quels ont \u00e9t\u00e9 vos premiers sympt\u00f4mes ?<\/strong>:<\/p>\n\n\n\n<p>Enfant, j'\u00e9tais lent.  Vers l'\u00e2ge de 45 ans, j'ai \u00e9prouv\u00e9 des difficult\u00e9s \u00e0 courir.<\/p>\n\n\n\n<p><strong>Avez-vous d'autres membres de votre famille atteints de LGMD ?<\/strong><\/p>\n\n\n\n<p>Oui, mon fr\u00e8re qui a 67 ans est atteint de LGMD1D et ma fille aussi.\nfille.<\/p>\n\n\n\n<p><strong>Quels sont, selon vous, les plus grands d\u00e9fis \u00e0 relever\ndans la vie avec le LGMD<\/strong>:<\/p>\n\n\n\n<p>Le plus grand d\u00e9fi pour moi a \u00e9t\u00e9 de m'adapter \u00e0 la faiblesse et de devoir ralentir progressivement.\nfaiblesse et de devoir ralentir progressivement.<\/p>\n\n\n\n<p><strong>Quelle est votre plus grande r\u00e9ussite ?<\/strong>:<\/p>\n\n\n\n<p>Ma plus grande r\u00e9alisation a \u00e9t\u00e9 la cr\u00e9ation de la Fondation LGMD-1D\nDNAJB6 qui est une fondation publique \u00e0 but non lucratif dont la mission est de\nde maintenir un lieu central o\u00f9 les personnes atteintes de la dystrophie musculaire des ceintures de type 1D (LGMD1D) peuvent se rencontrer\nla dystrophie musculaire des ceintures de type 1D (LGMD1D) de se rencontrer, de consolider les nouvelles pertinentes et de lancer des efforts de collecte de fonds afin de faire avancer la recherche.\nde collecter des fonds afin de faire avancer la recherche.&nbsp; <a href=\"https:\/\/lgmd1d.org\">https:\/\/lgmd1d.org<\/a>\n<\/p>\n\n\n\n<p>J'ai \u00e9galement cr\u00e9\u00e9 un registre de patients pour tous les patients diagnostiqu\u00e9s avec une forme autosomique dominante de LGMD.  (LGMD type 1)<\/p>\n\n\n\n<p><strong>Comment le LGMD vous a-t-il influenc\u00e9 pour devenir la personne que vous \u00eates aujourd'hui ?\npersonne que vous \u00eates aujourd'hui :<\/strong><\/p>\n\n\n\n<p>Le LGMD a eu un impact sur ma vie et sur la personne que je suis aujourd'hui.  Le fait de ralentir m'a permis d'appr\u00e9cier ce qui m'entoure, ma famille, mes amis et mes relations.\nma famille, mes amis et mes relations.<\/p>\n\n\n\n<p><strong>Que voulez-vous que le monde sache sur le LGMD ?<\/strong>:<\/p>\n\n\n\n<p>Nous devons continuer \u00e0 faire passer le message et \u00e0 nous connecter de mani\u00e8re \u00e0 contribuer \u00e0 la recherche d'un rem\u00e8de.  Par exemple, un registre des patients atteints de LGMD autosomique dominante (LGMD de type 1) sera essentiel \u00e0 la recherche et \u00e0 la d\u00e9couverte d'un rem\u00e8de.<\/p>\n\n\n\n<p><strong>Si votre LGMD pouvait \u00eatre \"gu\u00e9rie\" demain, quelle serait la premi\u00e8re chose que vous souhaiteriez faire ?\nserait la premi\u00e8re chose que vous voudriez faire<\/strong>:<\/p>\n\n\n\n<p>Si j'\u00e9tais gu\u00e9rie demain, j'irais danser et jouer au football avec mes petites-filles !<\/p>\n\n\n\n<p> <\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSpotlight interview\u201d Name:&nbsp; William&nbsp; Age: 62 years old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2860,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,102,104],"tags":[103],"class_list":["post-2862","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd-d1-dnajb6-related","category-lgmd1d","tag-lgmd-d1-dnajb6-related-united-states-lgmd1d"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Individual with LGMD: William - LGMD Awareness Foundation<\/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.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2019\/10\/01\/william\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Individual with LGMD: William - LGMD Awareness Foundation\" \/>\n<meta property=\"og:description\" content=\"LGMD \u201cSpotlight interview\u201d Name:&nbsp; 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