{"id":7660,"date":"2023-09-18T16:17:41","date_gmt":"2023-09-18T16:17:41","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=7660"},"modified":"2024-02-09T14:23:47","modified_gmt":"2024-02-09T14:23:47","slug":"individual-with-lgmd-victoria","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2023\/09\/18\/individual-with-lgmd-victoria\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Victoria"},"content":{"rendered":"

\"<\/p>\n

Nom<\/strong>: Victoria<\/p>\n

L'\u00e2ge<\/strong>: \u00a038<\/p>\n

Pays<\/strong>: \u00c9TATS-UNIS<\/p>\n

LGMD Sous-type<\/strong>: LGMD D1 li\u00e9 \u00e0 l'ADNJB6<\/p>\n

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

\u00c0 37 ans, j'ai re\u00e7u un diagnostic officiel, bien que je sois soup\u00e7onn\u00e9e d'\u00eatre atteinte de DM (type inconnu) depuis l'\u00e2ge de 14 ans.<\/p>\n

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

Mes premiers sympt\u00f4mes ont \u00e9t\u00e9 des difficult\u00e9s \u00e0 courir, \u00e0 monter les escaliers et \u00e0 me lever d'une position assise. D'une mani\u00e8re g\u00e9n\u00e9rale, j'ai ressenti une faiblesse globale dans les bras et les jambes.<\/p>\n

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

Non, je suis la seule personne de ma famille \u00e0 \u00eatre atteinte de LGMD.<\/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 est le d\u00e9clin de l'autonomie dans les t\u00e2ches quotidiennes telles que s'habiller, conduire, aller aux toilettes, pr\u00e9parer le d\u00eener, etc. L'acceptation !<\/p>\n

Quelles sont vos plus grandes r\u00e9alisations ?<\/strong><\/p>\n

Garder une attitude positive \u00e0 l'\u00e9gard de la maladie vis-\u00e0-vis de mon fils, et ne jamais lui montrer \u00e0 quel point je me sens d\u00e9prim\u00e9e ou \u00e0 quel point je me bats au quotidien.<\/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 devenue plus loquace et plus \u00e0 l'aise pour parler de la maladie. Je suis pass\u00e9e de l'apitoiement \u00e0 l'\u00e9ducation sur l'incapacit\u00e9, la sensibilisation et l'empathie.<\/p>\n

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

En tant que communaut\u00e9, nous ne sommes pas diff\u00e9rents des autres. Nous sommes tous des \u00eatres humains qui m\u00e9ritent le m\u00eame respect, le m\u00eame amour et la m\u00eame acceptation.<\/p>\n

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

Je m'envolerais bien pour Paris !<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":7661,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,102],"tags":[103],"class_list":["post-7660","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd-d1-dnajb6-related","tag-lgmd-d1-dnajb6-related-united-states-lgmd1d"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Victoria - 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\/2023\/09\/18\/individual-with-lgmd-victoria\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" 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