{"id":1176,"date":"2016-04-08T12:01:28","date_gmt":"2016-04-08T17:01:28","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1176"},"modified":"2016-04-08T12:01:28","modified_gmt":"2016-04-08T17:01:28","slug":"mary","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2016\/04\/08\/mary\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Mary"},"content":{"rendered":"<p>04\/08\/2016 - LGMD \"Spotlight Interview\" (en anglais)<\/p>\n<p><strong>NOM<\/strong>:  Marie\u00a0\u00a0 <strong>L'\u00e2ge<\/strong>: 46<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/04\/LGMD2A-Mary-BG.png\" rel=\"attachment wp-att-1177\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1177 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/04\/LGMD2A-Mary-BG-300x169.png\" alt=\"LGMD2A - Mary BG\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>PAYS<\/strong>: \u00c9tats-Unis<\/p>\n<p><strong>LGMD Sous-type<\/strong>: LGMD2A \/ Calpa\u00efnopathie<\/p>\n<p>&nbsp;<\/p>\n<p><strong>\u00c0 quel \u00e2ge avez-vous \u00e9t\u00e9 diagnostiqu\u00e9 ?<\/strong>:<\/p>\n<p>On m'a diagnostiqu\u00e9 une LGMD \u00e0 l'\u00e2ge de 25 ans.<\/p>\n<p><strong>Quels ont \u00e9t\u00e9 vos premiers sympt\u00f4mes ?<\/strong>:<\/p>\n<p>Mes premiers sympt\u00f4mes ont \u00e9t\u00e9 l'incapacit\u00e9 \u00e0 me lever d'une position assise sans prendre appui sur mes bras et des difficult\u00e9s \u00e0 monter les escaliers.<\/p>\n<p><strong>Avez-vous d'autres membres de votre famille atteints de LGMD ?<\/strong><\/p>\n<p>Non, je suis le seul membre de ma famille \u00e0 avoir re\u00e7u un diagnostic de LGMD.<\/p>\n<p><strong>Quels sont, selon vous, les plus grands d\u00e9fis \u00e0 relever pour vivre avec le LGMD ?<\/strong>:<\/p>\n<p>Le plus grand d\u00e9fi pour moi est d'essayer de rester ind\u00e9pendant dans mes activit\u00e9s quotidiennes.  La progression de la maladie est lente, mais il est difficile de s'adapter au fait de ne plus pouvoir faire ce que l'on faisait auparavant.<\/p>\n<p><strong>Quelle est votre plus grande r\u00e9ussite ?<\/strong>:<\/p>\n<p>Ma plus grande r\u00e9ussite a \u00e9t\u00e9 d'\u00e9pouser mon mari. Je suis devenue veuve en 2014.  Il a \u00e9t\u00e9 l'un de mes plus grands soutiens.  Il m'a inspir\u00e9e pour que je sois la meilleure personne possible.  Ma famille et mes amis m'encouragent et me soutiennent beaucoup.<\/p>\n<p><strong>Comment le LGMD vous a-t-il influenc\u00e9 pour que vous deveniez la personne que vous \u00eates aujourd'hui ?<\/strong><\/p>\n<p>Je ne consid\u00e8re rien comme acquis.  Chaque jour est un cadeau, certains meilleurs que d'autres.  Je suis devenue plus sociable lorsque ma mobilit\u00e9 est devenue limit\u00e9e, car je veux toujours vivre et \u00eatre active dans la vie malgr\u00e9 mon diagnostic.<\/p>\n<p><strong>Que voulez-vous que le monde sache sur le LGMD ?<\/strong>:<\/p>\n<p>La LGMD est une maladie qui provoque une fonte musculaire.<\/p>\n<p>Aidez ceux qui le peuvent, instruisez-vous et traitez tout le monde avec respect.<\/p>\n<p><strong>Si votre LGMD pouvait \u00eatre \"gu\u00e9rie\" demain, quelle serait la premi\u00e8re chose que vous souhaiteriez faire ?<\/strong>:<\/p>\n<p>Si un rem\u00e8de \u00e9tait trouv\u00e9 demain, je courrais, je danserais et je sauterais !  Toutes les choses que je ne peux plus faire physiquement seraient des priorit\u00e9s absolues !<\/p>\n<p>&nbsp;<\/p>\n<p>Pour lire d'autres \"LGMD Spotlight Interviews\" ou pour vous porter volontaire pour une prochaine interview, veuillez consulter notre site web \u00e0 l'adresse suivante : https:\/\/www.lgmd-info.org\/spotlight-interviews.<\/p>","protected":false},"excerpt":{"rendered":"<p>04\/08\/2016 &#8211;\u00a0LGMD \u201cSpotlight Interview\u201d NAME:\u00a0 Mary\u00a0\u00a0 Age: 46 COUNTRY: United [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1177,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,16],"class_list":["post-1176","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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