{"id":3178,"date":"2020-01-12T12:52:48","date_gmt":"2020-01-12T18:52:48","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3178"},"modified":"2020-01-12T12:52:48","modified_gmt":"2020-01-12T18:52:48","slug":"natasha","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2020\/01\/12\/natasha\/","title":{"rendered":"INDIVIDUO CON LGMD: Natasha"},"content":{"rendered":"<figure class=\"wp-block-image size-large\"><img decoding=\"async\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271024%27%20height%3D%27576%27%20viewBox%3D%270%200%201024%20576%27%3E%3Crect%20width%3D%271024%27%20height%3D%27576%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2020\/01\/LGMD1D-Natasha-1024x576.png\" alt=\"\" class=\"lazyload wp-image-3179\"\/><\/figure>\n\n\n\n<h3 class=\"wp-block-heading\">LGMD \"INTERVISTA SPOTLIGHT\"<\/h3>\n\n\n\n<p><strong>Nome<\/strong>:  Natasha&nbsp;\n<strong>Et\u00e0<\/strong>:\n25 anni<\/p>\n\n\n\n<p><strong>Paese<\/strong>: Stati Uniti<\/p>\n\n\n\n<p><strong>Sottotipo LGMD<\/strong>:   LGMD D1 DNAJB6-correlata (precedentemente LGMD tipo\n1D)<\/p>\n\n\n\n<p><strong>A che et\u00e0 \u00e8 stata fatta la diagnosi<\/strong>:<\/p>\n\n\n\n<p>Mi \u00e8 stata diagnosticata all'et\u00e0 di 23 anni.<\/p>\n\n\n\n<p><strong>Quali sono stati i primi sintomi<\/strong>:<\/p>\n\n\n\n<p>Il nostro sottotipo \u00e8 a insorgenza tardiva, quindi attualmente non ho sintomi, anche se crescendo c'erano piccole cose che hanno pi\u00f9 senso ora che so della mia diagnosi.  Da piccola non riuscivo a correre come i miei coetanei e nella danza avevo problemi ad alzarmi da terra senza usare le mani, per esempio.<\/p>\n\n\n\n<p><strong>Avete altri familiari affetti da LGMD:<\/strong><\/p>\n\n\n\n<p>S\u00ec, mio padre, mio zio (dal lato della famiglia di mio padre) e mio nonno paterno hanno tutti la stessa diagnosi.\npaterno hanno tutti la stessa diagnosi.<\/p>\n\n\n\n<p><strong>Quali sono, secondo lei, le maggiori sfide\nnel vivere con la LGMD<\/strong>:<\/p>\n\n\n\n<p>La sfida pi\u00f9 grande per me \u00e8 stata sapere che un giorno\nla mia mobilit\u00e0 sar\u00e0 inferiore a quella attuale e che potrei non essere in grado di continuare a\na condurre lo stile di vita attivo che attualmente mi piace condurre.<\/p>\n\n\n\n<p><strong>Qual \u00e8 il suo pi\u00f9 grande risultato<\/strong>:<\/p>\n\n\n\n<p>Non so quale sia il mio pi\u00f9 grande risultato... direi i legami familiari e di amicizia che ho mantenuto.  Inoltre, la comunit\u00e0 che abbiamo e stiamo costruendo per le forme dominanti di LGMD attraverso la LGMD-1D DNAJB6 Foundation, una fondazione pubblica senza scopo di lucro la cui missione \u00e8 mantenere un luogo centrale per le persone con diagnosi di distrofia muscolare del cinto arto di tipo 1D (LGMD1D) per incontrarsi, consolidare le notizie rilevanti e lanciare iniziative di raccolta fondi al fine di far progredire la ricerca.&nbsp; <a href=\"https:\/\/lgmd1d.org\">https:\/\/lgmd1d.org<\/a> &nbsp;Abbiamo anche istituito un registro dei pazienti per tutti i pazienti con diagnosi di una forma autosomica dominante di LGMD.&nbsp; <\/p>\n\n\n\n<p><strong>In che modo la LGMD l'ha influenzata nel diventare la persona che\npersona che siete oggi:<\/strong><\/p>\n\n\n\n<p>Mi ritrovo a pensare sempre al futuro, a come le mie azioni di adesso\nora avranno un impatto sul mio corpo, sulle persone che amo e sulla famiglia che spero di crescere.  Questo mi ha spinto a migliorare la mia pazienza e a cercare di\ndi condurre uno stile di vita meno intenso dal punto di vista fisico.<\/p>\n\n\n\n<p><strong>Cosa volete che il mondo sappia della LGMD?<\/strong>:<\/p>\n\n\n\n<p>Dobbiamo continuare a\na diffondere la parola e a connetterci in modo da favorire una cura.  Per esempio, un registro dei pazienti affetti da LGMD autosomica dominante\n(LGMD di tipo 1) sar\u00e0 fondamentale per la ricerca e per trovare una cura.<\/p>\n\n\n\n<p><strong>Se la vostra LGMD potesse essere \"curata\" domani, quale sarebbe la prima cosa che vorreste fare?\nsarebbe la prima cosa che vorreste fare<\/strong>:<\/p>\n\n\n\n<p>Se domani fossi guarito, andrei a ballare per festeggiare!!! <\/p>\n\n\n\n<hr class=\"wp-block-separator\"\/>\n\n\n\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 &#8220;SPOTLIGHT INTERVIEW&#8221; Name:&nbsp; Natasha&nbsp; Age: 25 years old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":3179,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,102,104],"tags":[],"class_list":["post-3178","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd-d1-dnajb6-related","category-lgmd1d"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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