{"id":3778,"date":"2021-01-03T13:42:06","date_gmt":"2021-01-03T19:42:06","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3778"},"modified":"2024-02-09T14:24:24","modified_gmt":"2024-02-09T14:24:24","slug":"individual-with-lgmd-lisa","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2021\/01\/03\/individual-with-lgmd-lisa\/","title":{"rendered":"INDIVIDUO CON LGMD: Lisa"},"content":{"rendered":"<div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-1 fusion-flex-container nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-content-wrap\" style=\"max-width:1456px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-0 fusion_builder_column_1_1 1_1 fusion-flex-column\" style=\"--awb-bg-size:cover;--awb-width-large:100%;--awb-margin-top-large:0px;--awb-spacing-right-large:1.92%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:1.92%;--awb-width-medium:100%;--awb-spacing-right-medium:1.92%;--awb-spacing-left-medium:1.92%;--awb-width-small:100%;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\"><div class=\"fusion-column-wrapper fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-text fusion-text-1\"><p><a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/01\/Unknown-Lisa-T-1.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-3780 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\/2021\/01\/Unknown-Lisa-T-1-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Intervista a riflettori accesi sulla LGMD<\/strong><\/p>\n<p><strong>NOME:<\/strong>\u00a0 Lisa\u00a0\u00a0\u00a0\u00a0 <strong>ET\u00c0:<\/strong> 50<\/p>\n<p><strong>PAESE:<\/strong> \u00a0 Stati Uniti d'America<\/p>\n<p><strong>SOTTOTIPO LGMD<\/strong>:   SCONOSCIUTO<\/p>\n<p><strong>A CHE ET\u00c0 LE \u00c8 STATA DIAGNOSTICATA:<\/strong><\/p>\n<p>Mi \u00e8 stata diagnosticata la LGMD all'et\u00e0 di 45 anni, dopo decenni di diagnosi errate.<\/p>\n<p><strong>QUALI SONO STATI I PRIMI SINTOMI:<\/strong><\/p>\n<p>I miei sintomi iniziali erano muscoli rigidi e intorpiditi. Ma ero un atleta, quindi i normali test di forza non mostravano debolezza. Anche la respirazione e l'attivit\u00e0 cardio sono sempre state un problema.<\/p>\n<p><strong>HA ALTRI FAMILIARI AFFETTI DA LGMD:<\/strong><\/p>\n<p>Mia sorella e mio nipote hanno la stessa mutazione ma con sintomi estremamente lievi (pi\u00f9 giovani).  I bambini vengono testati ora<\/p>\n<p><strong>QUALI SONO, SECONDO LEI, LE MAGGIORI SFIDE NEL VIVERE CON LA LGMD:<\/strong><\/p>\n<p>Le sfide pi\u00f9 grandi sono le cose semplici. Salire su un marciapiede o sollevare la spesa e i nipotini.  Alzarsi da una sedia, soprattutto al ristorante, ecc. Sembrano piccole cose, ma hanno un effetto su di me ogni giorno.<\/p>\n<p><strong>QUAL \u00c8 IL SUO PI\u00d9 GRANDE RISULTATO:<\/strong><\/p>\n<p>La mia pi\u00f9 grande realizzazione saranno sempre i miei figli. Il pi\u00f9 giovane ha 12 anni. La mia pi\u00f9 grande paura \u00e8 di non essere presente per lui come lo sono stata per gli altri.<\/p>\n<p><strong>IN CHE MODO LA LGMD L'HA INFLUENZATA NEL DIVENTARE LA PERSONA CHE \u00c8 OGGI:<\/strong><\/p>\n<p>Domanda difficile. Cerco di non lasciare che mi cambi, ma lo fa comunque.  Sono certamente pi\u00f9 consapevole delle sfide che le persone devono affrontare. Non solo le mie e non solo quelle fisiche.  Non sono una persona che ama dipendere dagli altri.  Sto lentamente cercando di capire come accettare l'aiuto senza scoraggiarmi.<\/p>\n<p><strong>COSA VUOLE CHE IL MONDO SAPPIA DELLA LGMD:<\/strong><\/p>\n<p>Che esiste ancora.  Che si presenta in molte forme e che non esiste ancora una cura.  Prego ogni giorno che la terapia genica venga accelerata.<\/p>\n<p><strong>SE LA VOSTRA LGM POTESSE ESSERE \"CURATA\" DOMANI, QUALE SAREBBE LA PRIMA COSA CHE VORRESTE FARE:<\/strong><\/p>\n<p>Se la mia LGMD fosse guarita domani, porterei i miei figli in Irlanda (sono irlandese).   Poi tornerei a girare per le case, cosa che amo e che non posso pi\u00f9 fare.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":3835,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13],"tags":[],"class_list":["post-3778","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>INDIVIDUAL WITH LGMD: Lisa - 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\" 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