{"id":2361,"date":"2019-01-15T10:00:27","date_gmt":"2019-01-15T16:00:27","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2361"},"modified":"2019-01-15T10:00:27","modified_gmt":"2019-01-15T16:00:27","slug":"individual-with-lgmd-andrea","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2019\/01\/15\/individual-with-lgmd-andrea\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Andrea"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

LGMD \"SPOTLIGHT INTERVIEW\"<\/strong><\/p>\n\n\n\n

Nom<\/strong>: Andrea  L'\u00e2ge<\/strong>: 24 ans<\/p>\n\n\n\n

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

LGMD Sous-type<\/strong>: LGMD2A - une forme de calpa\u00efnopathie <\/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 11 ans.<\/p>\n\n\n\n

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

\u00c0 l'\u00e2ge de 8 ans, je ne pouvais pas me tenir debout avec les talons au sol et j'ai commenc\u00e9 \u00e0 marcher sur les orteils peu de temps apr\u00e8s.\net j'ai commenc\u00e9 \u00e0 marcher sur les orteils peu de temps apr\u00e8s. Des faiblesses au niveau des \u00e9paules et des hanches\nont suivi.<\/p>\n\n\n\n

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

Non, je suis le seul membre de ma famille \u00e0 avoir re\u00e7u un diagnostic de LGMD.<\/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

Ne pas pouvoir utiliser Uber !<\/p>\n\n\n\n

La nature progressive de la maladie est un d\u00e9fi. J'ai d\u00fb m'adapter \u00e0 la perte de certaines capacit\u00e9s au fil du temps.\nJe dois m'adapter \u00e0 la perte de certaines capacit\u00e9s au fil du temps, et il est difficile de savoir que ces pertes vont se poursuivre.\nde savoir que ces pertes vont se poursuivre. Par exemple, je pouvais marcher lorsque j'\u00e9tais enfant,\nJ'ai utilis\u00e9 un Segway pour me d\u00e9placer pendant mon adolescence, et maintenant je me d\u00e9place en fauteuil roulant.\nfauteuil roulant. Pour moi, les ajustements les plus difficiles ont \u00e9t\u00e9 de ne plus pouvoir\nde me rendre chez des amis parce qu'il y a presque toujours des marches, et de ne plus pouvoir jouer des instruments de musique que j'avais l'habitude d'utiliser.\nne plus pouvoir jouer des instruments de musique que j'aimais autrefois.<\/p>\n\n\n\n

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

J'ai de la chance d'avoir trouv\u00e9 \u00e0 l'universit\u00e9 un domaine d'\u00e9tudes qui me passionne et que je peux poursuivre avec le LGMD. Je suis fi\u00e8re d'avoir d\u00e9m\u00e9nag\u00e9 dans un nouvel \u00c9tat pour suivre des \u00e9tudes sup\u00e9rieures en biostatistique et de vivre de mani\u00e8re ind\u00e9pendante. Mais de cours<\/g> plusieurs personnes m'ont aid\u00e9 tout au long du chemin (je vous aime maman et papa <\/g>:<\/g>).<\/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

Parfois, la vie vous impose des d\u00e9fis que vous ne pouvez pas changer,\nmais le processus de gestion de ces d\u00e9fis peut souvent \u00eatre tr\u00e8s gratifiant.\nVivre avec le LGMD a fait de moi une personne plus forte \u00e0 bien des \u00e9gards, malgr\u00e9 la faiblesse physique.\nphysique. Cela m'a \u00e9galement appris la valeur de la vuln\u00e9rabilit\u00e9 et de l'acceptation de la tristesse pour vivre pleinement la joie.\nla tristesse pour ressentir pleinement la joie. En fait, c'est peut-\u00eatre le film \"Inside Out\" qui m'a appris\nm'a appris cela...<\/p>\n\n\n\n

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

Tout le monde devrait regarder le TED Talk de Stella Young intitul\u00e9 \"Je ne suis pas votre inspiration, merci beaucoup\".\npas votre inspiration, merci beaucoup\". Elle partage un message important sur l'exploitation des personnes handicap\u00e9es.\nl'exploitation des personnes handicap\u00e9es. Je crois que la grande majorit\u00e9 d'entre nous\nla grande majorit\u00e9 d'entre nous sur cette terre fait de son mieux malgr\u00e9 les divers traumatismes qu'elle a subis.\nque nous avons subis. Pour ceux d'entre nous qui souffrent d'un handicap physique, ce traumatisme est un peu plus \u00e9vident \u00e0 l'\u0153il nu.\nun peu plus \u00e9vident \u00e0 l'\u0153il nu.<\/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

Cette question est la plus difficile pour moi. Je n'ai jamais\njamais \u00e9t\u00e9 jaloux des gens qui courent, qui font de la randonn\u00e9e ou qui vont \u00e0 la salle de sport. Je me contenterais probablement d'aller \u00e0 l'\u00e9cole en empruntant les escaliers plut\u00f4t que l'ascenseur.\nj'irais probablement \u00e0 l'\u00e9cole en empruntant les escaliers plut\u00f4t que l'ascenseur. Mais\nc'est une r\u00e9ponse ennuyeuse. Peut-\u00eatre que je serais plus dramatique ; je pourrais vendre mon fauteuil roulant\net utiliser l'argent pour emmener ma famille en Europe. Pouvoir utiliser les toilettes\ndans un avion pourrait \u00eatre excitant. Mais le traitement sp\u00e9cial qui accompagne l'utilisation d'un fauteuil roulant me manquerait.\nl'utilisation d'un fauteuil roulant. La diff\u00e9rence a ses avantages.<\/p>\n\n\n\n

*** Veuillez LIQUER, COMMENTER et PARTAGER cet article pour aider \u00e0 sensibiliser le public \u00e0 la LGMD.\nsensibilisation \u00e0 la LGMD !<\/p>\n\n\n\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:  Andrea  Age: 24 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":2360,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-2361","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: Andrea - 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=\"http:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2019\/01\/15\/individual-with-lgmd-andrea\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Andrea - 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