{"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\/it\/individuals-with-lgmd-interviews\/2015\/02\/12\/161\/","title":{"rendered":"INDIVIDUO CON LGMD: Lydia"},"content":{"rendered":"

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

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

Et\u00e0<\/strong>: 45<\/p>\n

PAESE<\/strong>: Stati Uniti<\/p>\n

SOTTOTIPO LGMD<\/strong>: LGMD2B \/ Miyoshi<\/p>\n

A CHE ET\u00c0 LE \u00c8 STATA DIAGNOSTICATA:<\/strong> 41<\/p>\n

QUALI SONO STATI I PRIMI SINTOMI:<\/strong>
\nI primi sintomi sono stati: ginocchia fuori posto, dolore alle gambe, ai piedi, al torace, al collo e alle braccia, cadute, letargia, una strana andatura a papera.<\/p>\n

HA ALTRI FAMILIARI AFFETTI DA LGMD:<\/strong>
\nNo<\/p>\n

QUALI SONO, SECONDO LEI, LE MAGGIORI SFIDE NEL VIVERE CON LA LGMD:<\/strong>
\nLa natura progressiva della patologia \u00e8 spaventosa. Anche la letargia che la LGMD provoca \u00e8 debilitante. Oltre alla patologia, trovo molto limitanti la mancanza di accessibilit\u00e0 e gli atteggiamenti sociali nei confronti delle persone disabili.<\/p>\n

QUAL \u00c8 IL SUO PI\u00d9 GRANDE RISULTATO:<\/strong>
\n\u00c8 una cosa difficile. Riuscire a lavorare, occuparmi di bambini piccoli, di una madre affetta da demenza e di mio padre anziano (con l'assistenza dei miei fratelli) e conseguire una laurea in Servizio sociale. Guardando indietro, mi stupisco di essere riuscita a fare tutto questo.<\/p>\n

IN CHE MODO LA LGMD L'HA INFLUENZATA NEL DIVENTARE LA PERSONA CHE \u00c8 OGGI:<\/strong>
\nHa aumentato la mia empatia verso gli altri ed \u00e8 stato l'impulso per lo sviluppo di una coscienza della disabilit\u00e0.<\/p>\n

COSA VUOLE CHE IL MONDO SAPPIA DELLA LGMD:<\/strong>
\nIn primo luogo, il fatto che ne siano a conoscenza. Anche la maggior parte dei medici professionisti non conosce questa condizione.<\/p>\n

In secondo luogo, \u00e8 progressiva e debilitante.<\/p>\n

In terzo luogo, mi sento abbastanza sicuro nell'affermare che la maggior parte di noi che ne \u00e8 affetta preferirebbe il contrario, ed \u00e8 per questo che la ricerca e la sensibilizzazione del pubblico sono cos\u00ec vitali.<\/p>\n

In quarto luogo, e questo \u00e8 un esempio, di recente in uno dei nostri gruppi online, le persone affette dalla mia patologia stavano discutendo le cinque cose che avrebbero voluto fare se fossero guarite. Cose come tenere in braccio i propri figli e abbracciare i propri cari. Questa \u00e8 la realt\u00e0 perniciosa della LGMD.<\/p>\n

SE LA VOSTRA LGM POTESSE ESSERE \"CURATA\" DOMANI, QUALE SAREBBE LA PRIMA COSA CHE VORRESTE FARE:<\/strong>
\nMi piacerebbe poter fare un'escursione in un'area boschiva con la mia famiglia.<\/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\/it\/individuals-with-lgmd-interviews\/2015\/02\/12\/161\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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