{"id":1192,"date":"2016-04-30T08:00:30","date_gmt":"2016-04-30T13:00:30","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1192"},"modified":"2016-04-30T08:00:30","modified_gmt":"2016-04-30T13:00:30","slug":"rebecca","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2016\/04\/30\/rebecca\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Rebecca"},"content":{"rendered":"

04\/30\/2016 \u00a0<\/strong>LGMD \"Spotlight Interview\" (en anglais)<\/strong><\/p>\n

 <\/p>\n

NOM<\/strong>: Rebecca\u00a0\u00a0\u00a0 AGE<\/strong>: 29 ans\"LGMD2A<\/a><\/p>\n

PAYS<\/strong>: Australie<\/p>\n

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

 <\/p>\n

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

On m'a diagnostiqu\u00e9 une LGMD2A \u00e0 l'\u00e2ge de 26 ans.<\/p>\n

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

Mes premiers sympt\u00f4mes ont \u00e9t\u00e9 les suivants : difficult\u00e9s \u00e0 monter les escaliers et les pentes et impossibilit\u00e9 de se lever sans utiliser mes mains.<\/p>\n

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

Je suis la seule sur 4.<\/p>\n

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

Le plus grand d\u00e9fi pour moi est de lutter contre la fatigue. Il peut devenir tr\u00e8s difficile de trouver un \u00e9quilibre entre en faire trop et ne pas en faire assez. J'ai constat\u00e9 que je m'adapte au changement pratiquement chaque ann\u00e9e. C'est aussi un d\u00e9fi de ne pas \u00eatre trop dur avec moi-m\u00eame lorsque je vois d'autres personnes faire des activit\u00e9s que je ne peux pas faire. Il peut \u00eatre difficile de demander de l'aide lorsque je ne peux pas accomplir une t\u00e2che par moi-m\u00eame. Douleur - Je ne me souviens pas de la derni\u00e8re fois o\u00f9 je me suis r\u00e9veill\u00e9 sans ressentir de douleur, d'inconfort ou de fragilit\u00e9.<\/p>\n

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

Ma fille a 10 ans et elle est ma plus grande r\u00e9ussite. Je ne suis peut-\u00eatre pas dou\u00e9e pour certaines choses dans la vie, mais je peux honn\u00eatement dire que je suis la meilleure des mamans ! Elle est ma vie. Et comme elle grandit, elle commence \u00e0 s'occuper de moi \u00e0 plus d'un titre.<\/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 suis peut-\u00eatre en train de m'affaiblir physiquement, mais je suis devenu plus fort mentalement.<\/p>\n

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

C'est d\u00e9pouiller tout ce que l'on sait.<\/p>\n

Je veux aussi qu'ils connaissent la Coalition to Cure Calpain 3 - l'organisation qui se consacre \u00e0 la recherche d'un rem\u00e8de et d'un traitement pour la LGMD2A.<\/p>\n

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

Si j'\u00e9tais \"gu\u00e9rie\" demain, je sortirais avec ma famille sans aucune limite. Je courrais avec ma fille et je monterais 100 marches.<\/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":"

04\/30\/2016 \u00a0LGMD \u201cSpotlight Interview\u201d   NAME:\u00a0 Rebecca\u00a0\u00a0\u00a0 AGE: 29 years […]<\/p>","protected":false},"author":1,"featured_media":1193,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[51,12,15],"class_list":["post-1192","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-australia","tag-calpainopathy","tag-lgmd2a"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Rebecca - 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\/04\/30\/rebecca\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Rebecca - 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