{"id":5519,"date":"2021-09-20T00:30:58","date_gmt":"2021-09-20T00:30:58","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5519"},"modified":"2024-02-09T14:24:00","modified_gmt":"2024-02-09T14:24:00","slug":"individual-with-lgmd-sanjana","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2021\/09\/20\/individual-with-lgmd-sanjana\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Sanjana"},"content":{"rendered":"

\"<\/p>\n

LGMD \"SPOTLIGHT INTERVIEW\"<\/p>\n

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

L'\u00e2ge<\/strong>: 55 ans<\/p>\n

Pays<\/strong>: Inde<\/p>\n

LGMD Sous-type<\/strong>: LGMD2A\/R1 Calpa\u00efne 3 - apparent\u00e9<\/p>\n

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

J'ai \u00e9t\u00e9 diagnostiqu\u00e9e \u00e0 l'\u00e2ge de 13 ans.<\/p>\n

Quels ont \u00e9t\u00e9 vos premiers SYMPT\u00d4MES ?<\/strong><\/p>\n

Les sympt\u00f4mes ont commenc\u00e9 \u00e0 se manifester vers l'\u00e2ge de cinq ans. Je marchais sur les orteils en montant les escaliers ou en grimpant une c\u00f4te. J'avais besoin de m'appuyer sur mes genoux pour me lever d'une position assise. Je me tenais en \u00e9quilibre sur mes orteils lorsque j'\u00e9tais en position accroupie.<\/p>\n

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

Oui, mes deux fr\u00e8res a\u00een\u00e9s ont \u00e9galement \u00e9t\u00e9 diagnostiqu\u00e9s comme \u00e9tant atteints de LGMD2A\/R1.<\/p>\n

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

Les plus grands d\u00e9fis concernent les activit\u00e9s de la vie quotidienne. Et le fait de ne pas pouvoir servir mes parents qui vieillissent de jour en jour.<\/p>\n

Quelle est votre plus grande R\u00c9ALISATION ?<\/strong><\/p>\n

Ma plus grande r\u00e9alisation a \u00e9t\u00e9 la cr\u00e9ation d'une organisation de lutte contre la dystrophie musculaire, l'Association indienne de lutte contre la dystrophie musculaire. www.iamd.in<\/a> Et maintenant la cr\u00e9ation d'un centre de r\u00e9habilitation pour toutes les formes de dystrophie musculaire.<\/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

Ce que je suis aujourd'hui, je le dois \u00e0 la LGMD. J'ai dirig\u00e9 avec succ\u00e8s une boutique de v\u00eatements de cr\u00e9ateurs pour dames pendant 27 ans, tout en mettant sur pied l'organisation pour la dystrophie musculaire.<\/p>\n

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

Je veux que le monde sache tout sur la LGMD - les sympt\u00f4mes, les d\u00e9fis, la prise en charge, la r\u00e9\u00e9ducation, les derni\u00e8res recherches scientifiques et l'organisation qui s'efforce de sensibiliser et de soulager les personnes et les familles touch\u00e9es par cette maladie neuromusculaire progressive.<\/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 suis gu\u00e9ri, je veux qu'il en soit de m\u00eame pour tous les individus diagnostiqu\u00e9s dans ce monde.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5520,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[],"class_list":["post-5519","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Sanjana - 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\/09\/20\/individual-with-lgmd-sanjana\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Sanjana - 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