{"id":1163,"date":"2016-03-28T17:23:19","date_gmt":"2016-03-28T22:23:19","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1163"},"modified":"2016-03-28T17:23:19","modified_gmt":"2016-03-28T22:23:19","slug":"emily","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2016\/03\/28\/emily\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Emily"},"content":{"rendered":"

03\/28\/2016<\/strong><\/p>\n

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

Nom :<\/strong>\u00a0 Emily\u00a0\u00a0\u00a0\u00a0 L'\u00e2ge<\/strong>: 29 ans\"LGMD2B<\/a><\/p>\n

Pays<\/strong>: Royaume-Uni<\/p>\n

LGMD Sous-type<\/strong>: LGMD2B<\/p>\n

 <\/p>\n

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

J'ai re\u00e7u la confirmation de mon diagnostic de LGMD2B \u00e0 l'\u00e2ge de 28 ans, mais \u00e0 l'\u00e2ge de 24 ans, on le soup\u00e7onnait d\u00e9j\u00e0.<\/p>\n

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

Mon premier sympt\u00f4me a \u00e9t\u00e9 la difficult\u00e9 \u00e0 monter les escaliers et j'ai \u00e9galement remarqu\u00e9 que je ne pouvais pas me tenir sur la pointe des pieds pour atteindre les livres sur mon \u00e9tag\u00e8re.<\/p>\n

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

Non, il n'y a que moi - tout seul !<\/p>\n

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

Il y a de nombreux d\u00e9fis \u00e0 relever. Par exemple, essayer d'\u00eatre accept\u00e9e comme \"handicap\u00e9e\" alors que je n'utilise pas de fauteuil roulant. Je trouve que les gens ne veulent pas me parler de mon handicap en g\u00e9n\u00e9ral, ce qui peut \u00eatre tr\u00e8s isolant ! Parfois, je suis g\u00ean\u00e9e et anxieuse. Le pire, c'est de tomber devant les gens, et j'ai du mal \u00e0 faire des choses que je pouvais faire autrefois, ce qui est assez triste. La course \u00e0 pied me manque ! Il y a aussi le besoin d'essayer de s'expliquer. Il m'arrive de vaciller et de me sentir path\u00e9tique ou faible.<\/p>\n

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

En ce moment, je quitte la maison et je vis de fa\u00e7on ind\u00e9pendante \u00e0 la campagne. Je suis \u00e9galement b\u00e9n\u00e9vole pour Muscular Dystrophy UK en tant que pair, ce qui est pour moi un accomplissement extraordinaire.<\/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

Le fait d'\u00eatre atteint de LGMD m'a d\u00e9finitivement permis de voir les choses diff\u00e9remment ! J'ai appris \u00e0 appr\u00e9cier les petites choses de la vie et je suis plus d\u00e9termin\u00e9e \u00e0 accomplir des choses \u00e0 n'importe quelle \u00e9chelle. Je me sens tr\u00e8s positive et je veux inverser mon diagnostic pour me concentrer sur les bonnes choses et non sur les mauvaises. Cela m'a rendu plus conscient et plus empathique, je veux aider les autres comme moi. Cela a \u00e9galement renforc\u00e9 mon sens de l'humour !<\/p>\n

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

Tout ! Je veux simplement que les gens comprennent la complexit\u00e9 de ces conditions et de la condition elle-m\u00eame.<\/p>\n

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

C'est une question difficile, il y en a tellement !<\/p>\n

Je voudrais probablement courir d'abord, mais aussi monter sur une moto sportive et apprendre \u00e0 conduire !<\/p>\n

 <\/p>\n

Pour lire d'autres \"LGMD Spotlight Interviews\" ou pour vous porter volontaire en vue d'une prochaine interview, veuillez consulter notre site web \u00e0 l'adresse suivante :\u00a0 https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

03\/28\/2016 LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:\u00a0 Emily\u00a0\u00a0\u00a0\u00a0 Age: 29 yrs. old […]<\/p>","protected":false},"author":1,"featured_media":1164,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[60],"class_list":["post-1163","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b-united-kingdom"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Emily - 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\/2016\/03\/28\/emily\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Emily - 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