{"id":416,"date":"2015-02-12T22:30:56","date_gmt":"2015-02-13T04:30:56","guid":{"rendered":"http:\/\/mainstay-bg.com\/wp\/?p=161"},"modified":"2015-02-12T22:30:56","modified_gmt":"2015-02-13T04:30:56","slug":"161","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2015\/02\/12\/161\/","title":{"rendered":"INDIVIDUELLE AVEC LGMD : Lydia"},"content":{"rendered":"

02\/12\/2014:\"LGMD2B<\/a><\/p>\n

NOM<\/strong>: Lydia<\/p>\n

L'\u00e2ge<\/strong>: 45<\/p>\n

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

SOUS-TYPE LGMD<\/strong>: LGMD2B \/ Miyoshi<\/p>\n

\u00c0 QUEL \u00c2GE AVEZ-VOUS \u00c9T\u00c9 DIAGNOSTIQU\u00c9 ?<\/strong> 41<\/p>\n

QUELS ONT \u00c9T\u00c9 VOS PREMIERS SYMPT\u00d4MES :<\/strong>
\nMes premiers sympt\u00f4mes ont \u00e9t\u00e9 les suivants : genoux qui se d\u00e9robent, douleurs aux jambes, aux pieds, \u00e0 la poitrine, au cou et aux bras, chutes, l\u00e9thargie, d\u00e9marche \u00e9trange en dandinant.<\/p>\n

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

QUELS SONT, SELON VOUS, LES PLUS GRANDS D\u00c9FIS \u00c0 RELEVER POUR VIVRE AVEC LA LGMD :<\/strong>
\nLa nature progressive de la maladie est effrayante. La l\u00e9thargie que provoque la LGMD est \u00e9galement d\u00e9bilitante. Outre la maladie, je trouve que le manque d'accessibilit\u00e9 et les attitudes sociales \u00e0 l'\u00e9gard des personnes handicap\u00e9es sont tr\u00e8s contraignants.<\/p>\n

QUELLE EST VOTRE PLUS GRANDE R\u00c9ALISATION :<\/strong>
\nCe n'est pas une mince affaire. J'ai r\u00e9ussi \u00e0 travailler, \u00e0 m'occuper de jeunes enfants, d'une m\u00e8re atteinte de d\u00e9mence et de mon p\u00e8re \u00e2g\u00e9 (avec l'aide de mes fr\u00e8res et s\u0153urs), et \u00e0 obtenir une licence en travail social. Avec le recul, je suis \u00e9tonn\u00e9e d'avoir pu faire tout cela.<\/p>\n

COMMENT LA LGMD VOUS A-T-ELLE INFLUENC\u00c9 POUR QUE VOUS DEVENIEZ LA PERSONNE QUE VOUS \u00caTES AUJOURD'HUI :<\/strong>
\nIl a renforc\u00e9 mon empathie envers les autres et m'a incit\u00e9 \u00e0 prendre conscience de mon handicap.<\/p>\n

QUE VOULEZ-VOUS QUE LE MONDE SACHE \u00c0 PROPOS DE LA LGMD :<\/strong>
\nTout d'abord, ils ne sont pas du tout au courant de l'existence de cette maladie. M\u00eame la plupart des professionnels de la sant\u00e9 ignorent l'existence de cette maladie.<\/p>\n

Deuxi\u00e8mement, elle est progressive et d\u00e9bilitante.<\/p>\n

Troisi\u00e8mement, je peux affirmer sans me tromper que la plupart d'entre nous qui en sommes atteints pr\u00e9f\u00e9reraient qu'il en soit autrement, raison pour laquelle la recherche et la sensibilisation du public sont si vitales.<\/p>\n

Quatri\u00e8mement, et c'est un exemple, r\u00e9cemment dans l'un de nos groupes en ligne, des personnes atteintes de ma maladie discutaient des cinq choses qu'elles aimeraient faire si elles \u00e9taient gu\u00e9ries. Des choses telles que prendre leurs enfants dans les bras et \u00e9treindre leurs proches. Telle est la r\u00e9alit\u00e9 pernicieuse de la LGMD.<\/p>\n

SI VOTRE LGMD POUVAIT \u00caTRE \"GU\u00c9RIE\" DEMAIN, QUELLE SERAIT LA PREMI\u00c8RE CHOSE QUE VOUS VOUDRIEZ FAIRE :<\/strong>
\nJ'aimerais pouvoir faire une randonn\u00e9e dans une zone bois\u00e9e avec ma famille.<\/p>","protected":false},"excerpt":{"rendered":"

02\/12\/2014: NAME: Lydia Age: 45 COUNTRY: United States LGMD SUB-TYPE: […]<\/p>","protected":false},"author":1,"featured_media":162,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[23,25,16],"class_list":["post-416","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b","tag-miyoshi","tag-united-states"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Lydia<\/title>\n<meta name=\"description\" content=\"Lydia, 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=\"http:\/\/www.lgmd-info.org\/fr\/individuals-with-lgmd-interviews\/2015\/02\/12\/161\/\" \/>\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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