{"id":3220,"date":"2020-02-26T12:54:04","date_gmt":"2020-02-26T18:54:04","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3220"},"modified":"2024-02-09T14:24:40","modified_gmt":"2024-02-09T14:24:40","slug":"chuck","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2020\/02\/26\/chuck\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Chuck"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

LGMD \"Spotlight Interview\" (en anglais)<\/h2>\n\n\n\n

Nom<\/strong>: Chuck\n                 L'\u00e2ge<\/strong>: 63 ans<\/p>\n\n\n\n

Pays<\/strong>: Canada<\/p>\n\n\n\n

LGMD Sous-type<\/strong>: LGMD\n2L\/R12 Li\u00e9e \u00e0 l'anoctamine 5<\/p>\n\n\n\n

\u00c0 quel \u00e2ge avez-vous \u00e9t\u00e9 diagnostiqu\u00e9 ?<\/strong>?  <\/p>\n\n\n\n

 J'ai \u00e9t\u00e9 diagnostiqu\u00e9e \u00e0 l'\u00e2ge de\n\u00e0 l'\u00e2ge de 50 ans.<\/p>\n\n\n\n

Quels ont \u00e9t\u00e9 vos premiers SYMPT\u00d4MES ?<\/strong>   <\/p>\n\n\n\n

Lorsque je suis entr\u00e9 \u00e0 l'h\u00f4pital \u00e0 la suite d'un accident vasculaire c\u00e9r\u00e9bral, les m\u00e9decins ont remarqu\u00e9 que tous les muscles de mon dos avaient disparu et que les os \u00e9taient saillants.\nont remarqu\u00e9 que tous les muscles avaient disparu de mon dos et que les os \u00e9taient saillants.<\/p>\n\n\n\n

Avez-vous d'autres membres de votre famille qui sont atteints de LGMD ?   <\/strong><\/p>\n\n\n\n

Non, je suis la seule personne atteinte de LGMD dans ma famille.<\/p>\n\n\n\n

Quels sont, selon vous, les plus grands d\u00e9fis \u00e0 relever\ndans la vie avec le LGMD<\/strong>?  <\/p>\n\n\n\n

Le plus grand d\u00e9fi est de me voir m'affaiblir et de devoir faire moins d'activit\u00e9s.\nactivit\u00e9s.<\/strong><\/p>\n\n\n\n

Quelle est votre plus grande R\u00c9ALISATION ?<\/strong>   <\/p>\n\n\n\n

En plus de mes petits-enfants, j'\u00e9tais un expert en bardage et j'ai con\u00e7u un\nguide de mesure pour l'installation de D.Y.I. qui est maintenant la norme pour l'Am\u00e9rique du Nord.\nl'Am\u00e9rique du Nord. De plus, un pr\u00e9sentoir de bardage et de bardeaux que j'ai con\u00e7u et fabriqu\u00e9 a \u00e9t\u00e9 install\u00e9 dans tous les magasins Home Depot du Nord.\nbardeaux que j'ai con\u00e7u et fabriqu\u00e9 a \u00e9t\u00e9 install\u00e9 dans tous les Home Depot d'Am\u00e9rique du Nord.\nAm\u00e9rique du Nord.  <\/p>\n\n\n\n

Je collecte des fonds et je sensibilise les gens \u00e0 la maladie de Mannheim en organisant des tables.\ntables. Chaque ann\u00e9e, je collecte environ\n$12 000,00<\/p>\n\n\n\n

J'ai \u00e9galement \u00e9t\u00e9 pr\u00e9sident de la section de London, en Ontario, de la Dystrophie musculaire pendant quatre ans.\nDystrophie musculaire de London, en Ontario, pendant 4 ans. <\/p>\n\n\n\n

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

Ne pouvant plus participer \u00e0 ce que je faisais avant, j'ai d\u00fb me r\u00e9inventer.\nj'ai d\u00fb me r\u00e9inventer. J'ai vu une utilit\u00e9 \u00e0 mes comp\u00e9tences en mati\u00e8re de conception et de marketing.\nmes comp\u00e9tences en mati\u00e8re de conception et de marketing et je collecte d\u00e9sormais $12 000 euros chaque ann\u00e9e pour MDC.\nJ'aime pouvoir faire la diff\u00e9rence et sensibiliser le public \u00e0 la maladie de Manille et je trouve cela tr\u00e8s gratifiant. \n<\/p>\n\n\n\n

Que voulez-vous que le monde sache sur le LGMD ?<\/strong>?<\/p>\n\n\n\n

Qu'il s'attaque aux muscles des jambes 1st<\/sup>. Il s'agit d'une maladie musculaire h\u00e9r\u00e9ditaire. <\/p>\n\n\n\n

J'ai d\u00e9couvert \u00e0 quel point de nombreux endroits me sont inaccessibles parce qu'ils ont des marches.\nparce qu'ils ont des marches.<\/p>\n\n\n\n

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

Si j'\u00e9tais gu\u00e9ri demain, je r\u00e9serverais un voyage de plong\u00e9e sous-marine en\nl'Australie.<\/p>","protected":false},"excerpt":{"rendered":"

LGMD “Spotlight Interview” Name:     Chuck                  Age:  63 years old […]<\/p>","protected":false},"author":1,"featured_media":3221,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,49],"tags":[],"class_list":["post-3220","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2l"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Chuck - 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\/2020\/02\/26\/chuck\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Chuck - LGMD Awareness Foundation\" \/>\n<meta property=\"og:description\" content=\"LGMD “Spotlight Interview” Name:     Chuck                  Age:  63 years old […]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2020\/02\/26\/chuck\/\" \/>\n<meta property=\"og:site_name\" content=\"LGMD Awareness Foundation\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/LGMDawareness\/\" \/>\n<meta property=\"article:published_time\" content=\"2020-02-26T18:54:04+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2024-02-09T14:24:40+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/06\/LGMD-Logo_1200X630.png\" \/>\n\t<meta property=\"og:image:width\" content=\"1200\" \/>\n\t<meta property=\"og:image:height\" content=\"630\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"dooley\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@LgmdAwareness\" \/>\n<meta name=\"twitter:site\" content=\"@LgmdAwareness\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"dooley\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2020\/02\/26\/chuck\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2020\/02\/26\/chuck\/\"},\"author\":{\"name\":\"dooley\",\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#\/schema\/person\/007755074875959ad5503c1c969678c7\"},\"headline\":\"INDIVIDUAL WITH LGMD: Chuck\",\"datePublished\":\"2020-02-26T18:54:04+00:00\",\"dateModified\":\"2024-02-09T14:24:40+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2020\/02\/26\/chuck\/\"},\"wordCount\":378,\"publisher\":{\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#organization\"},\"image\":{\"@id\":\"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2020\/02\/26\/chuck\/#primaryimage\"},\"thumbnailUrl\":\"\",\"articleSection\":[\"Individuals with LGMD - 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