{"id":967,"date":"2015-07-29T10:25:33","date_gmt":"2015-07-29T15:25:33","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=967"},"modified":"2015-07-29T10:25:33","modified_gmt":"2015-07-29T15:25:33","slug":"patricia","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2015\/07\/29\/patricia\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Patricia"},"content":{"rendered":"

07\/29\/2015:<\/strong><\/p>\n

NOM<\/strong>: Patricia \u00a0AGE<\/strong>: 26 ans\"LGMD2A<\/a><\/p>\n

PAYS<\/strong>: \u00c9tats-Unis<\/p>\n

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

 <\/p>\n

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

On m'a diagnostiqu\u00e9 une DM \u00e0 l'\u00e2ge de 12 ans.<\/p>\n

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

Les premiers sympt\u00f4mes ont \u00e9t\u00e9 la marche sur les orteils, les bras qui ne se tendent pas, la d\u00e9marche boiteuse et l'absence de prise de poids.<\/p>\n

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

Aucun membre de ma famille n'est atteint de dystrophie musculaire ou 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 de ne pas pouvoir faire certaines choses comme marcher, courir, me lever du lit tout seul, prendre mon bain tout seul, pr\u00e9parer le d\u00eener, jouer avec mon neveu sur le sol. Tout ce que je fais est un d\u00e9fi.<\/p>\n

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

Ma plus grande r\u00e9ussite serait de m'\u00eatre mari\u00e9e \u00e0 un homme merveilleux et, je l'esp\u00e8re, d'avoir bient\u00f4t fond\u00e9 une famille, mais aussi d'avoir obtenu mon fauteuil \u00e9lectrique et d'avoir pu cuisiner pour la premi\u00e8re fois depuis deux ans, et d'avoir pu sortir avec mon mari.<\/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

Cela m'a permis de r\u00e9aliser que m\u00eame si je suis limit\u00e9 dans ce que je peux faire, avec les bons outils, je peux toujours faire certaines de ces choses, mais d'une mani\u00e8re diff\u00e9rente.<\/p>\n

QUE VOULEZ-VOUS QUE LE MONDE SACHE SUR LA LGMD ?<\/strong>:<\/p>\n

Renseignez-vous sur le LGMD et sur les difficult\u00e9s que rencontrent les personnes concern\u00e9es. Ne jugez pas quelqu'un sur son apparence. Chaque forme de DM a une apparence diff\u00e9rente, mais cela ne fait pas la personne, c'est sa personnalit\u00e9 qui fait la personne. Si vous voyez quelqu'un qui lutte, que ce soit en fauteuil roulant ou en marchant, proposez-lui votre aide. Je sais que lorsque quelqu'un me demande s'il peut m'aider, j'en suis tr\u00e8s reconnaissante.<\/p>\n

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

Je courrais aussi vite que possible sur la route et autour du p\u00e2t\u00e9 de maisons, je sauterais en l'air et peut-\u00eatre m\u00eame ferais-je des flips. Je r\u00eave du jour o\u00f9 je pourrai le faire.<\/p>","protected":false},"excerpt":{"rendered":"

07\/29\/2015: NAME: Patricia \u00a0AGE:\u00a0 26 yrs old COUNTRY: United States […]<\/p>","protected":false},"author":1,"featured_media":968,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,16],"class_list":["post-967","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-united-states"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Patricia<\/title>\n<meta name=\"description\" content=\"Patricia who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares her experience in living with this progressive neuro-muscular disease.\" \/>\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\/2015\/07\/29\/patricia\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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