{"id":5582,"date":"2021-12-12T18:05:10","date_gmt":"2021-12-12T18:05:10","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5582"},"modified":"2024-02-09T14:23:57","modified_gmt":"2024-02-09T14:23:57","slug":"individual-with-lgmd-soralla","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2021\/12\/12\/individual-with-lgmd-soralla\/","title":{"rendered":"INDIVIDUO CON LGMD: Soralla"},"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><img decoding=\"async\" class=\"lazyload size-medium wp-image-5581 alignright\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/12\/LGMD2A-Soralla-R-300x169.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/12\/LGMD2A-Soralla-R-300x169.png\" alt=\"Lgmd2a Soralla R\" width=\"300\" height=\"169\" srcset=\"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-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/12\/LGMD2A-Soralla-R-200x113.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/12\/LGMD2A-Soralla-R-300x169.png 300w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/12\/LGMD2A-Soralla-R-400x225.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/12\/LGMD2A-Soralla-R-600x338.png 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/12\/LGMD2A-Soralla-R-768x432.png 768w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/12\/LGMD2A-Soralla-R-800x450.png 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/12\/LGMD2A-Soralla-R-1024x576.png 1024w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/12\/LGMD2A-Soralla-R-1200x675.png 1200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/12\/LGMD2A-Soralla-R.png 1280w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/p>\n<p><strong>Intervista a riflettori accesi sulla LGMD <\/strong><\/p>\n<p><strong>N<\/strong><strong>ame<\/strong>: Soralla<\/p>\n<p><strong>Et\u00e0<\/strong>: 28<\/p>\n<p><strong>Paese<\/strong>: Stati Uniti<\/p>\n<p><strong>Sottotipo LGMD<\/strong>:  LGMD 2A\/R1 legato alla calpaina 3<\/p>\n<p><strong>A che et\u00e0 \u00e8 stata fatta la diagnosi<\/strong>?<\/p>\n<p>Mi \u00e8 stata diagnosticata all'et\u00e0 di 23 anni.<\/p>\n<p><strong>Quali sono stati i primi sintomi?<\/strong><\/p>\n<p>All'inizio i miei sintomi erano una leggera debolezza della parte inferiore del corpo, la difficolt\u00e0 a salire le scale con la stessa velocit\u00e0 con cui ero abituata o ad alzarmi dal pavimento, soprattutto quando ci sedevamo nel quadrato durante le lezioni di educazione fisica. Tenete presente che questi sintomi sono iniziati nell'11<sup>th<\/sup> scuola superiore. Tuttavia, mi \u00e8 stata diagnosticata solo all'et\u00e0 di 23 anni.<\/p>\n<p><strong>Ha altri familiari affetti da LGMD?<\/strong><\/p>\n<p>A nessun altro membro della famiglia \u00e8 stata diagnosticata la LGMD. Ho due fratelli pi\u00f9 giovani che non sono stati sottoposti al test, ma hanno superato i 23 anni e per il momento stanno entrambi bene.<\/p>\n<p><strong>Quali sono, secondo lei, le sfide pi\u00f9 grandi da affrontare nella convivenza con la LGMD?<\/strong>?<\/p>\n<p>Personalmente, per me la sfida pi\u00f9 grande \u00e8 accettare la persona che sto diventando. Dico questo perch\u00e9 a volte mi rendo conto che molti dei cambiamenti che sto vivendo non sono una mia scelta e sono fuori dal mio controllo. Uno di questi \u00e8 la lenta perdita dell'indipendenza che mi permette di badare a me stessa. Dopo aver vissuto una vita molto indipendente e aver avuto la sensazione che il mondo fosse a portata di mano, la sensazione di aver perso quella visione del futuro \u00e8 stata e sar\u00e0 probabilmente la mia sfida pi\u00f9 grande.<\/p>\n<p><strong>Qual \u00e8 il suo pi\u00f9 grande risultato?<\/strong><\/p>\n<p>Il mio pi\u00f9 grande risultato \u00e8 aver trovato la mia voce. Non sono una grande sostenitrice come vorrei, ma ho parlato di me e della mia storia un paio di volte. Ho creato un canale YouTube e ho raccontato la mia storia dal mio punto di vista, e sono anche molto orgogliosa di me stessa per essere tornata a scuola, per finire la mia formazione che era stata bloccata a causa della diagnosi di questa disabilit\u00e0.<\/p>\n<p><strong>In che modo la LGMD l'ha influenzata nel diventare la persona che \u00e8 oggi?<\/strong><\/p>\n<p>Ha aperto il mio cuore, la mia mente e la mia anima in un modo che nessun'altra cosa avrebbe mai potuto fare. Voglio credere di essere sempre stata molto empatica e di avere un cuore grande, ma purtroppo un cuore molto debole. Da bambina sono stata spesso vittima di bullismo e ho subito un trauma. Ora che sto affrontando questa situazione, sento che tutto ci\u00f2 che \u00e8 successo in passato ha preparato il mio cuore a questa battaglia. Lo dico con forza e orgoglio perch\u00e9 ora sono pi\u00f9 forte emotivamente di quanto avessi mai immaginato. Se oggi dovessi parlare di me a chi \u00e8 pi\u00f9 giovane, non crederei a me stessa.<\/p>\n<p><strong>Cosa volete che il mondo sappia della LGMD?<\/strong>?<\/p>\n<p>Voglio che il mondo sappia che siamo importanti. La LGMD \u00e8 una disabilit\u00e0 fisica, ma ha un peso sulla salute emotiva, mentale e persino spirituale. Quindi, per favore, aiutate gli altri a raccontare le loro verit\u00e0, le loro storie e aiutateci a diffondere nel mondo il nostro messaggio di speranza, che un giorno potremo trovare una cura.<\/p>\n<p><strong>Se la vostra LGMD potesse essere \"curata\" domani, quale sarebbe la prima cosa che vorreste fare?<\/strong>?<\/p>\n<p>Se potessi guarire domani, ci sono cos\u00ec tante cose, avventure, uscite ed eventi a cui parteciperei e a cui andrei. Ma una cosa che sicuramente continuerei a fare \u00e8 sostenere e lavorare duramente per assicurarmi che tutti coloro che possono essere curati abbiano l'opportunit\u00e0 che meritano. Perch\u00e9 dopo aver vissuto con questo problema, non posso alzarmi e vivere la mia vita senza guardare indietro come se non fosse mai successo nulla.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5581,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[70],"class_list":["post-5582","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2a-calpainopathy-united-states"],"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: Soralla - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, 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