{"id":5372,"date":"2021-07-11T21:37:18","date_gmt":"2021-07-11T21:37:18","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5372"},"modified":"2024-02-09T14:24:04","modified_gmt":"2024-02-09T14:24:04","slug":"individual-with-lgmd-lena","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2021\/07\/11\/individual-with-lgmd-lena\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Lena"},"content":{"rendered":"

\"Lgmd2j<\/p>\n

Nom<\/strong>: Lena\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 L'\u00e2ge<\/strong>: \u00a044<\/p>\n

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

LGMD Sous-type<\/strong>: Dystrophie musculaire des ceintures de type 2J\/R10 li\u00e9e au titan<\/p>\n

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

J'ai \u00e9t\u00e9 diagnostiqu\u00e9e \u00e0 l'\u00e2ge de 42 ans.<\/p>\n

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

En tant qu'enseignante dans une \u00e9cole maternelle, j'ai remarqu\u00e9 qu'il devenait tr\u00e8s difficile de se lever du sol. Puis j'ai commenc\u00e9 \u00e0 tomber et \u00e0 perdre l'\u00e9quilibre.<\/p>\n

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

On nous a diagnostiqu\u00e9 \u00e0 ma s\u0153ur et \u00e0 moi une LGMD de sous-type 2J. Nous pensons \u00e9galement que notre p\u00e8re et tous nos oncles auraient pu en \u00eatre atteints (ils sont tous d\u00e9c\u00e9d\u00e9s et n'ont jamais \u00e9t\u00e9 diagnostiqu\u00e9s). (Ils sont tous d\u00e9c\u00e9d\u00e9s et n'ont jamais \u00e9t\u00e9 diagnostiqu\u00e9s).<\/p>\n

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

L'impossibilit\u00e9 de pratiquer toutes les activit\u00e9s physiques que je souhaite. L'incertitude de l'avenir et la question de savoir si mes enfants seront eux aussi atteints de LGMD. Un autre d\u00e9fi auquel je suis confront\u00e9e est de faire face \u00e9motionnellement \u00e0 l'affaiblissement progressif de mes jambes et de mes membres.<\/p>\n

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

Je suis fi\u00e8re d'\u00eatre une m\u00e8re et une \u00e9pouse. Je suis \u00e9galement fi\u00e8re d'\u00eatre active dans un groupe social communautaire, de participer \u00e0 \"Rock The Vote\" et d'apprendre \u00e0 utiliser les m\u00e9dias sociaux pour rencontrer des gens dans le monde entier.<\/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 plus \u00e0 m\u00eame de d\u00e9fendre ma sant\u00e9. Je suis plus \u00e0 m\u00eame de poser des questions et de prendre des mesures qui m'aident et qui aident d'autres personnes, alors qu'elles auraient pu \u00eatre ignor\u00e9es ou n\u00e9glig\u00e9es.<\/p>\n

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

Vous pouvez encore aimer, rire et vivre une vie pleine de sens avec le LGMD. Les limites physiques de notre corps ne nous emp\u00eachent pas de continuer \u00e0 apprendre et \u00e0 d\u00e9couvrir le monde.<\/p>\n

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

Si je pouvais \u00eatre gu\u00e9rie demain, j'irais \u00e0 la plage et je remuerais mes orteils dans l'oc\u00e9an !<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5373,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,66],"tags":[68,78],"class_list":["post-5372","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2j","tag-lgmd2j-titinopathy","tag-lgmd2j-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Lena - 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\/07\/11\/individual-with-lgmd-lena\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Lena - 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