{"id":1330,"date":"2016-09-23T09:22:39","date_gmt":"2016-09-23T14:22:39","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1330"},"modified":"2016-09-23T09:22:39","modified_gmt":"2016-09-23T14:22:39","slug":"tony","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2016\/09\/23\/tony\/","title":{"rendered":"INDIVIDUO CON LGMD: Tony"},"content":{"rendered":"<p>Intervista a riflettori accesi sulla LGMD<\/p>\n<p><strong>Nome<\/strong>: Tony \u00a0<strong>Et\u00e0<\/strong>:\u00a0 32<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/09\/LGMD2i-Tony-H.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1329 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/09\/LGMD2i-Tony-H-300x169.png\" alt=\"lgmd2i-tony-h\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Paese<\/strong>: Stati Uniti<\/p>\n<p><strong>Sottotipo LGMD<\/strong>: LGMD2i<\/p>\n<p>&nbsp;<\/p>\n<p><strong>A CHE ET\u00c0 \u00c8 STATA FATTA LA DIAGNOSI<\/strong>:<\/p>\n<p>Mi \u00e8 stata diagnosticata la LGMD all'et\u00e0 di 26 anni presso la Cleveland Clinic e poi mi \u00e8 stata ufficialmente diagnosticata la 2i l'anno scorso attraverso un test genetico.<\/p>\n<p><strong>QUALI SONO STATI I PRIMI SINTOMI<\/strong>:<\/p>\n<p>Guardando al passato, ho sempre lottato per stare al passo con gli altri ragazzi mentre facevo sport, escursioni, corse, ecc. I miei primi sintomi evidenti di \"qualcosa che non va\" hanno iniziato a manifestarsi mentre ero in tourn\u00e9e con le band e caricavo l'attrezzatura ogni sera, circa 10 anni fa. Ho iniziato a fare un po' di fatica a fare cose per le quali non avevo mai avuto problemi (salire le scale senza usare un corrimano, trasportare grandi attrezzature, ecc.) Ho continuato a notare piccole cose che diventavano pi\u00f9 difficili durante l'universit\u00e0, ma (ovviamente) ho ignorato la cosa per anni.<\/p>\n<p><strong>HA ALTRI FAMILIARI AFFETTI DA LGMD: <\/strong><\/p>\n<p>No. Non \u00e8 vero. Solo io.<\/p>\n<p><strong>QUALI SONO, SECONDO LEI, LE MAGGIORI SFIDE NEL VIVERE CON LA LGMD<\/strong>:<\/p>\n<p>Adattarsi e rinunciare a cose che mi sono piaciute molto. Dover fare molta attenzione a ogni singolo movimento. Mi mancano molto cose come andare a correre (anche se non era molto aggraziato), camminare per fare la spesa e semplicemente andare dal punto A al punto B senza inibizioni.<\/p>\n<p><strong>QUAL \u00c8 IL SUO PI\u00d9 GRANDE RISULTATO<\/strong>:<\/p>\n<p>Finendo l'universit\u00e0 dopo averla messa in pausa per suonare e viaggiare con i miei amici. Scrivere commedie per un film, una serie web e un libro indipendenti. Trasferirmi a Los Angeles e perseguire\/realizzare una carriera nell'intrattenimento\/media e sposare la persona pi\u00f9 perfetta per me al mondo.<\/p>\n<p><strong>IN CHE MODO LA LGMD L'HA INFLUENZATA NEL DIVENTARE LA PERSONA CHE \u00c8 OGGI: <\/strong><\/p>\n<p>Ha migliorato notevolmente la mia capacit\u00e0 di risolvere i problemi, rendendomi pi\u00f9 intraprendente, creativo e paziente. Sono stato in grado di applicarlo alla mia carriera e ad altri aspetti della mia vita che mi hanno reso un compagno di squadra, un amico, un marito e una persona creativa migliore. Almeno credo che sia cos\u00ec e spero che altri siano d'accordo!<\/p>\n<p><strong>COSA VUOLE CHE IL MONDO SAPPIA DELLA LGMD: <\/strong><\/p>\n<p>Un buon inizio sarebbe far sapere al mondo intero che esiste davvero. Che \u00e8 una grande lotta per chi ne \u00e8 affetto, ma che molti di noi vivono vite felici\/produttive e che ci sono trattamenti e cure all'orizzonte che vorremmo fossero aiutati e compresi da tutti per spingerli al traguardo.<\/p>\n<p><strong>SE LA VOSTRA LGM POTESSE ESSERE \"CURATA\" DOMANI, QUALE SAREBBE LA PRIMA COSA CHE VORRESTE FARE?<\/strong>:<\/p>\n<p>Cavolo... ci penso continuamente, quindi ho gi\u00e0 programmato la giornata: Porterei il mio cane a fare una bella e lunga passeggiata (magari a correre?). Porterei a casa tutta la spesa invece di doverla far fare alla mia mogliettina. Giocherei a palleggi con alcuni ragazzi del college e forse proverei questa cosa del \"trekking\" che sembra piacere tanto alla gente di Los Angeles.<\/p>\n<p>**********<\/p>\n<p>Per leggere altre \"interviste LGMD Spotlight\" o per proporsi come volontari per una prossima intervista, visitate il nostro sito web: <a href=\"https:\/\/www.lgmd-info.org\/it\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSpotlight Interview\u201d Name: Tony \u00a0Age:\u00a0 32 Country: United States [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1329,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[61],"class_list":["post-1330","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i","tag-lgmd2i-united-kingdom"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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