{"id":1980,"date":"2018-06-03T16:24:02","date_gmt":"2018-06-03T21:24:02","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1980"},"modified":"2018-06-03T16:24:02","modified_gmt":"2018-06-03T21:24:02","slug":"anne","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Anne"},"content":{"rendered":"

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

Nom<\/strong>: Anne\u00a0 \u00a0L'\u00e2ge<\/strong>: 56 ans\u00a0\u00a0\"\"<\/a><\/p>\n

Pays<\/strong>: \u00c9tats-Unis<\/p>\n

LGMD Sous-type<\/strong>: LGMD2A - \u00e9galement connue sous le nom de Calpainopathie<\/p>\n

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

Pour la dystrophie musculaire, j'ai \u00e9t\u00e9 diagnostiqu\u00e9e vers l'\u00e2ge de 4 ans. Le diagnostic sp\u00e9cifique 2A n'a \u00e9t\u00e9 pos\u00e9 que lors d'un test ADN \u00e0 l'\u00e2ge de 46 ans.<\/p>\n

Quels ont \u00e9t\u00e9 vos premiers sympt\u00f4mes ?<\/strong>:<\/p>\n

Mon premier sympt\u00f4me a \u00e9t\u00e9 que je marchais sur les orteils et que ma m\u00e8re avait l'impression que les choses n'allaient pas.<\/p>\n

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

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

Quels sont, selon vous, les plus grands d\u00e9fis \u00e0 relever pour vivre avec le LGMD ?<\/strong>:<\/p>\n

Je trouve qu'il est difficile de rester dans la soci\u00e9t\u00e9. Ne pas pouvoir entrer dans la maison des autres, sauter dans la voiture et partir ou voler facilement vers d'autres endroits me fait me sentir exclue. J'ai du mal \u00e0 m'habiller et j'entends ensuite parler de toutes les choses merveilleuses que font mes amis et ma famille, ce qui me d\u00e9courage. Je veux faire partie de la vie des gens et ne pas me contenter de les observer depuis le bord de la route.<\/p>\n

Quelle est votre plus grande r\u00e9ussite ?<\/strong>:<\/p>\n

Je suis fi\u00e8re d'avoir obtenu mon dipl\u00f4me universitaire et d'avoir r\u00e9ussi ma carri\u00e8re. Naviguer dans le monde de l'entreprise et concourir pour de nouveaux postes a \u00e9t\u00e9 difficile, mais j'y suis parvenue ! Bien que je ne sois plus en mesure de travailler, le fait de savoir que j'ai r\u00e9ussi alors que mon corps se d\u00e9t\u00e9riorait me fait du bien.<\/p>\n

Comment le LGMD vous a-t-il influenc\u00e9 pour que vous deveniez la personne que vous \u00eates aujourd'hui ?<\/strong><\/p>\n

Je pense que le fait d'\u00eatre atteint de LGMD m'a appris \u00e0 \u00e9tablir des priorit\u00e9s. Pas seulement pour les t\u00e2ches, mais aussi pour la qualit\u00e9 de vie. J'ai une \u00e9nergie limit\u00e9e et j'ai appris \u00e0 la d\u00e9penser pour des choses qui ont du sens dans l'ensemble. La vaisselle sale dans l'\u00e9vier n'est pas aussi importante que de passer du temps avec mon mari ou un ami.<\/p>\n

Je pense \u00e9galement que le fait d'avoir connu mes propres difficult\u00e9s m'a aid\u00e9e \u00e0 faire preuve de plus de compassion \u00e0 l'\u00e9gard des autres personnes en difficult\u00e9.<\/p>\n

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

Je voudrais qu'ils sachent \u00e0 quel point cette maladie est invalidante et qu'il est possible de la gu\u00e9rir ! En contribuant \u00e0 la recherche, d'autres personnes peuvent nous aider \u00e0 gu\u00e9rir cette maladie.<\/p>\n

Si votre LGMD pouvait \u00eatre \"gu\u00e9rie\" demain, quelle serait la premi\u00e8re chose que vous souhaiteriez faire ?<\/strong>:<\/p>\n

Je me pr\u00e9cipiterais vers mon mari et lui ferais un \u00e9norme c\u00e2lin !<\/p>\n

 <\/p>\n

*** Veuillez LIQUER, COMMENTER et PARTAGER cet article pour aider \u00e0 sensibiliser le public \u00e0 la LGMD !<\/p>\n

 <\/p>\n

*** 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<\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSpotlight Interview\u201d Name:\u00a0 Anne\u00a0 \u00a0Age:\u00a0 56 yrs. old\u00a0\u00a0 Country:\u00a0 […]<\/p>","protected":false},"author":1,"featured_media":1981,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-1980","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Anne - 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\/2018\/06\/03\/anne\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Anne - 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