{"id":3778,"date":"2021-01-03T13:42:06","date_gmt":"2021-01-03T19:42:06","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3778"},"modified":"2024-02-09T14:24:24","modified_gmt":"2024-02-09T14:24:24","slug":"individual-with-lgmd-lisa","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2021\/01\/03\/individual-with-lgmd-lisa\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Lisa"},"content":{"rendered":"

\"\"<\/a><\/p>\n

LGMD \"Spotlight Interview\" (en anglais)<\/strong><\/p>\n

NOM :<\/strong>\u00a0 Lisa\u00a0\u00a0\u00a0\u00a0 AGE :<\/strong> 50<\/p>\n

PAYS :<\/strong> \u00a0 \u00c9tats-Unis d'Am\u00e9rique<\/p>\n

SOUS-TYPE LGMD<\/strong>: INCONNU<\/p>\n

\u00c0 QUEL \u00c2GE AVEZ-VOUS \u00c9T\u00c9 DIAGNOSTIQU\u00c9 ?<\/strong><\/p>\n

On m'a diagnostiqu\u00e9 une LGMD \u00e0 l'\u00e2ge de 45 ans, apr\u00e8s des d\u00e9cennies d'erreurs de diagnostic.<\/p>\n

QUELS ONT \u00c9T\u00c9 VOS PREMIERS SYMPT\u00d4MES :<\/strong><\/p>\n

Mes premiers sympt\u00f4mes \u00e9taient des muscles raides et engourdis. Mais j'\u00e9tais un athl\u00e8te et les tests de force normaux n'ont pas r\u00e9v\u00e9l\u00e9 de faiblesse. La respiration et le cardio ont toujours \u00e9t\u00e9 un probl\u00e8me \u00e9galement.<\/p>\n

AVEZ-VOUS D'AUTRES MEMBRES DE VOTRE FAMILLE QUI SONT ATTEINTS DE LA LGMD :<\/strong><\/p>\n

Ma s\u0153ur et mon neveu ont la m\u00eame mutation mais des sympt\u00f4mes extr\u00eamement l\u00e9gers jusqu'\u00e0 pr\u00e9sent ( plus jeunes). Les enfants sont actuellement test\u00e9s.<\/p>\n

QUELS SONT, SELON VOUS, LES PLUS GRANDS D\u00c9FIS \u00c0 RELEVER POUR VIVRE AVEC LA LGMD :<\/strong><\/p>\n

Les plus grands d\u00e9fis sont des choses simples. Monter sur un trottoir ou soulever les courses et les petits-enfants. Se lever d'une chaise, en particulier au restaurant, etc. Ces choses semblent insignifiantes, mais elles m'affectent tous les jours.<\/p>\n

QUELLE EST VOTRE PLUS GRANDE R\u00c9ALISATION :<\/strong><\/p>\n

Ma plus grande r\u00e9ussite sera toujours mes enfants. Mon plus jeune a 12 ans. Ma plus grande crainte est de ne pas \u00eatre l\u00e0 pour lui comme je l'ai \u00e9t\u00e9 pour les autres.<\/p>\n

COMMENT LA LGMD VOUS A-T-ELLE INFLUENC\u00c9 POUR QUE VOUS DEVENIEZ LA PERSONNE QUE VOUS \u00caTES AUJOURD'HUI :<\/strong><\/p>\n

Question difficile. J'essaie de ne pas me laisser changer, mais c'est ce qui se passe. Je suis certainement plus consciente des d\u00e9fis auxquels les gens sont confront\u00e9s. Pas seulement les miens et pas seulement sur le plan physique. Je ne suis pas une personne qui aime d\u00e9pendre des autres. Je dois peu \u00e0 peu apprendre \u00e0 accepter de l'aide sans me d\u00e9courager.<\/p>\n

QUE VOULEZ-VOUS QUE LE MONDE SACHE \u00c0 PROPOS DE LA LGMD :<\/strong><\/p>\n

Qu'elle existe toujours. Qu'elle se pr\u00e9sente sous de nombreuses formes et qu'il n'existe toujours pas de traitement. Je prie chaque jour pour que la th\u00e9rapie g\u00e9nique soit acc\u00e9l\u00e9r\u00e9e.<\/p>\n

SI VOTRE LGMD POUVAIT \u00caTRE \"GU\u00c9RIE\" DEMAIN, QUELLE SERAIT LA PREMI\u00c8RE CHOSE QUE VOUS VOUDRIEZ FAIRE :<\/strong><\/p>\n

Si mon LGMD \u00e9tait gu\u00e9ri demain, j'emm\u00e8nerais mes enfants en Irlande (je suis irlandais). Je me remettrais alors \u00e0 la vente de maisons, ce que j'adore mais que je ne peux plus faire.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":3835,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13],"tags":[],"class_list":["post-3778","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Lisa - 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\/2021\/01\/03\/individual-with-lgmd-lisa\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" 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