{"id":1047,"date":"2015-11-06T10:43:55","date_gmt":"2015-11-06T16:43:55","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1047"},"modified":"2015-11-06T10:43:55","modified_gmt":"2015-11-06T16:43:55","slug":"siri","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2015\/11\/06\/siri\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Siri"},"content":{"rendered":"

11\/06\/2015<\/strong><\/p>\n

NOM<\/strong>: Siri\u00a0 AGE<\/strong>: 28 ans<\/p>\n

PAYS<\/strong>: Norv\u00e8ge<\/p>\n

LGMD Sous-type<\/strong>: LGMD2A \/ Calpa\u00efnopathie\"LGMD2A<\/a><\/p>\n

 <\/p>\n

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

J'ai \u00e9t\u00e9 diagnostiqu\u00e9e \u00e0 l'\u00e2ge de 26 ans.<\/p>\n

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

J'ai commenc\u00e9 \u00e0 ressentir une fatigue inexpliqu\u00e9e \u00e0 l'\u00e2ge de 16 ans. \u00c0 l'\u00e2ge de 19 ans, j'ai remarqu\u00e9 que j'avais du mal \u00e0 poser mes pieds sur le sol.<\/p>\n

bras droit au-dessus de ma t\u00eate. Au d\u00e9but de la vingtaine, les cordons de mes talons ont commenc\u00e9 \u00e0 me g\u00eaner, car ils \u00e9taient tr\u00e8s serr\u00e9s. Quelques ann\u00e9es plus tard<\/p>\n

Plus tard, j'ai commenc\u00e9 \u00e0 avoir des difficult\u00e9s avec les escaliers et les si\u00e8ges bas, et je ne pouvais plus courir ni sauter.<\/p>\n

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

Non, je suis le seul membre de ma famille \u00e0 \u00eatre atteint de LGMD2A.<\/p>\n

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

Les t\u00e2ches quotidiennes que les gens consid\u00e8rent comme allant de soi me frustrent vraiment certains jours. Comme sortir d'un<\/p>\n

chaise, me tourner dans mon lit ou lacer mes chaussures - toutes ces petites choses me fatiguent et je n'aime pas perdre mon temps.<\/p>\n

l'\u00e9nergie. Mais la v\u00e9ritable lutte est tout le travail suppl\u00e9mentaire que repr\u00e9sente un handicap. Les gens ne voient pas toutes les<\/p>\n

Les heures que je passe \u00e0 faire de la paperasserie pour obtenir les choses dont j'ai besoin et comprendre mes droits, la physioth\u00e9rapie, les rendez-vous chez le m\u00e9decin et ainsi de suite, ou tout le temps que je \"gaspille\" \u00e0 me reposer parce que j'en ai trop fait un jour. C'est aussi un d\u00e9fi d'\u00eatre d\u00e9pendant des autres.<\/p>\n

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

J'ai pass\u00e9 6 ans \u00e0 l'universit\u00e9 et obtenu mon dipl\u00f4me d'enseignant. J'ai \u00e9galement visit\u00e9 de nombreux<\/p>\n

et j'ai fait de la randonn\u00e9e dans plusieurs montagnes malgr\u00e9 mes difficult\u00e9s.<\/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

Il m'a appris \u00e0 ne rien tenir pour acquis. Il m'a rendue plus humble et plus reconnaissante pour toutes les petites choses de la vie. Elle m'a appris \u00e0 ralentir, \u00e0 \u00eatre plus patiente et \u00e0 oser demander de l'aide pour les petites t\u00e2ches. Et \u00e0 profiter de chaque jour ! Cela m'a \u00e9galement rendue plus cr\u00e9ative, car je dois trouver de nouvelles fa\u00e7ons de faire les choses. Et je me suis fait tellement de nouveaux amis ! J'adore cela.<\/p>\n

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

Le fait qu'elle existe r\u00e9ellement est un bon d\u00e9but ! Et qu'elle affecte les gens de diff\u00e9rentes mani\u00e8res, mais que pour la plupart d'entre nous, elle est...<\/p>\n

Il est tr\u00e8s frustrant et d\u00e9primant de perdre des capacit\u00e9s au fil du temps. Nous sommes toujours confront\u00e9s \u00e0 ce probl\u00e8me, puisqu'il s'agit d'un probl\u00e8me de sant\u00e9 publique.<\/p>\n

maladie \u00e9volutive. C'est un deuil permanent. Et qu'elle affecte aussi nos proches. Soyez toujours bienveillants.<\/p>\n

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

Je courrais ! Et je sauterais partout. Et je danserais toute la nuit ! Et j'aiderais mes amis \u00e0 bouger ou quelque chose comme \u00e7a, haha \ud83d\ude09<\/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.<\/p>\n

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

11\/06\/2015 NAME:\u00a0 Siri\u00a0 AGE: \u00a028 yrs. old COUNTRY: \u00a0Norway LGMD […]<\/p>","protected":false},"author":1,"featured_media":1048,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,45],"class_list":["post-1047","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-norway"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Siri<\/title>\n<meta name=\"description\" content=\"Siri, diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares her experience in living with this progressive neuro-muscular disease.\" \/>\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\/2015\/11\/06\/siri\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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