{"id":1980,"date":"2018-06-03T16:24:02","date_gmt":"2018-06-03T21:24:02","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1980"},"modified":"2018-06-03T16:24:02","modified_gmt":"2018-06-03T21:24:02","slug":"anne","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/","title":{"rendered":"INDIVIDUO CON LGMD: Anne"},"content":{"rendered":"

Intervista a riflettori accesi sulla LGMD<\/strong><\/p>\n

Nome<\/strong>: Anna\u00a0 \u00a0Et\u00e0<\/strong>: 56 anni\u00a0\u00a0\"\"<\/a><\/p>\n

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

Sottotipo LGMD<\/strong>: LGMD2A - nota anche come Calpainopatia<\/p>\n

A che et\u00e0 \u00e8 stata fatta la diagnosi<\/strong>:<\/p>\n

La distrofia muscolare mi \u00e8 stata diagnosticata all'et\u00e0 di 4 anni. La diagnosi specifica di 2A \u00e8 avvenuta solo con un test del DNA all'et\u00e0 di 46 anni.<\/p>\n

Quali sono stati i primi sintomi<\/strong>:<\/p>\n

Il mio primo sintomo fu che camminavo sulle punte dei piedi e una sensazione \"viscerale\" che mia madre ebbe che le cose non andavano bene.<\/p>\n

Avete altri familiari affetti da LGMD:<\/strong><\/p>\n

No, sono l'unica persona della mia famiglia.<\/p>\n

Quali sono, secondo lei, le sfide pi\u00f9 grandi da affrontare nella convivenza con la LGMD?<\/strong>:<\/p>\n

Trovo difficile rimanere parte della societ\u00e0. Non essere in grado di entrare nelle case degli altri, di saltare in macchina e andare o di volare facilmente in altri luoghi mi fa sentire esclusa. La fatica di vestirmi e il sentir parlare di tutte le cose meravigliose che fanno i miei amici e la mia famiglia mi scoraggiano. Voglio essere inclusa nella vita delle persone e non stare sempre a guardare in disparte.<\/p>\n

Qual \u00e8 il suo pi\u00f9 grande risultato<\/strong>:<\/p>\n

Sono orgogliosa di essermi laureata e di aver avuto una carriera di successo. Navigare nel mondo aziendale e competere per nuove posizioni \u00e8 stato difficile, ma ce l'ho fatta! Anche se non sono pi\u00f9 in grado di lavorare, sapere che sono riuscita ad avere successo mentre il mio corpo si deteriorava mi fa sentire bene.<\/p>\n

In che modo la LGMD l'ha influenzata nel diventare la persona che \u00e8 oggi:<\/strong><\/p>\n

Credo che la LGMD mi abbia insegnato a stabilire le priorit\u00e0. Non solo per i compiti, ma anche per la qualit\u00e0 della vita. Ho un'energia limitata e ho imparato a spenderla in cose che hanno senso per il quadro generale. I piatti sporchi nel lavandino non sono importanti quanto passare del tempo con mio marito o con un amico.<\/p>\n

Credo anche che le mie difficolt\u00e0 mi abbiano aiutato a essere pi\u00f9 compassionevole verso gli altri che stanno lottando.<\/p>\n

Cosa volete che il mondo sappia della LGMD?<\/strong>:<\/p>\n

Vorrei che sapessero quanto \u00e8 debilitante e che si pu\u00f2 curare! Contribuendo alla ricerca, altri possono aiutarci a curare questa malattia.<\/p>\n

Se la vostra LGMD potesse essere \"curata\" domani, quale sarebbe la prima cosa che vorreste fare?<\/strong>:<\/p>\n

Correrei da mio marito e lo abbraccerei forte!<\/p>\n

 <\/p>\n

*** Per favore, metti un LIKE, un COMMENTO e condividi questo post per contribuire a sensibilizzare l'opinione pubblica sulla LGMD!<\/p>\n

 <\/p>\n

*** Per leggere altre \"interviste LGMD Spotlight\" o per proporsi come volontario per una prossima intervista, visitate il nostro sito web all'indirizzo https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSpotlight Interview\u201d Name:\u00a0 Anne\u00a0 \u00a0Age:\u00a0 56 yrs. old\u00a0\u00a0 Country:\u00a0 […]<\/p>","protected":false},"author":1,"featured_media":1981,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-1980","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Anne - 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\" href=\"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Anne - LGMD Awareness Foundation\" \/>\n<meta property=\"og:description\" content=\"LGMD \u201cSpotlight Interview\u201d Name:\u00a0 Anne\u00a0 \u00a0Age:\u00a0 56 yrs. old\u00a0\u00a0 Country:\u00a0 […]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/\" \/>\n<meta property=\"og:site_name\" content=\"LGMD Awareness Foundation\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/LGMDawareness\/\" \/>\n<meta property=\"article:published_time\" content=\"2018-06-03T21:24:02+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/06\/LGMD-Logo_1200X630.png\" \/>\n\t<meta property=\"og:image:width\" content=\"1200\" \/>\n\t<meta property=\"og:image:height\" content=\"630\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"dooley\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@LgmdAwareness\" \/>\n<meta name=\"twitter:site\" content=\"@LgmdAwareness\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"dooley\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/\"},\"author\":{\"name\":\"dooley\",\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#\/schema\/person\/007755074875959ad5503c1c969678c7\"},\"headline\":\"INDIVIDUAL WITH LGMD: Anne\",\"datePublished\":\"2018-06-03T21:24:02+00:00\",\"dateModified\":\"2018-06-03T21:24:02+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/\"},\"wordCount\":458,\"publisher\":{\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#organization\"},\"image\":{\"@id\":\"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/#primaryimage\"},\"thumbnailUrl\":\"\",\"keywords\":[\"LGMD2A; Calpainopathy; United States\"],\"articleSection\":[\"Individuals with LGMD - Interviews\",\"LGMD2A\"],\"inLanguage\":\"it-IT\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/\",\"url\":\"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/\",\"name\":\"INDIVIDUAL WITH LGMD: Anne - LGMD Awareness Foundation\",\"isPartOf\":{\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/#primaryimage\"},\"image\":{\"@id\":\"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/#primaryimage\"},\"thumbnailUrl\":\"\",\"datePublished\":\"2018-06-03T21:24:02+00:00\",\"dateModified\":\"2018-06-03T21:24:02+00:00\",\"breadcrumb\":{\"@id\":\"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/#breadcrumb\"},\"inLanguage\":\"it-IT\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"it-IT\",\"@id\":\"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/#primaryimage\",\"url\":\"\",\"contentUrl\":\"\"},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/www.lgmd-info.org\/de\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"INDIVIDUAL WITH LGMD: Anne\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#website\",\"url\":\"https:\/\/www.lgmd-info.org\/de\/\",\"name\":\"LGMD Awareness Foundation\",\"description\":\"Information Hub for the LGMD community\",\"publisher\":{\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#organization\"},\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/www.lgmd-info.org\/de\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"it-IT\"},{\"@type\":\"Organization\",\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#organization\",\"name\":\"LGMD Awareness Foundation, Inc.\",\"url\":\"https:\/\/www.lgmd-info.org\/de\/\",\"logo\":{\"@type\":\"ImageObject\",\"inLanguage\":\"it-IT\",\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#\/schema\/logo\/image\/\",\"url\":\"https:\/\/lgmd-info.org\/wp-content\/uploads\/2021\/02\/LGMD_Logo.png\",\"contentUrl\":\"https:\/\/lgmd-info.org\/wp-content\/uploads\/2021\/02\/LGMD_Logo.png\",\"width\":208,\"height\":61,\"caption\":\"LGMD Awareness Foundation, Inc.\"},\"image\":{\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#\/schema\/logo\/image\/\"},\"sameAs\":[\"https:\/\/www.facebook.com\/LGMDawareness\/\",\"https:\/\/x.com\/LgmdAwareness\",\"https:\/\/www.instagram.com\/lgmdawareness\/\"]},{\"@type\":\"Person\",\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#\/schema\/person\/007755074875959ad5503c1c969678c7\",\"name\":\"dooley\",\"image\":{\"@type\":\"ImageObject\",\"inLanguage\":\"it-IT\",\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#\/schema\/person\/image\/\",\"url\":\"https:\/\/secure.gravatar.com\/avatar\/c87b3b784fd4c1975884b6c3eab282b5?s=96&d=mm&r=g\",\"contentUrl\":\"https:\/\/secure.gravatar.com\/avatar\/c87b3b784fd4c1975884b6c3eab282b5?s=96&d=mm&r=g\",\"caption\":\"dooley\"},\"sameAs\":[\"https:\/\/live-lgmd-2021.pantheonsite.io\"]}]}<\/script>\n<!-- \/ Yoast SEO plugin. -->","yoast_head_json":{"title":"INDIVIDUAL WITH LGMD: Anne - LGMD Awareness Foundation","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/","og_locale":"it_IT","og_type":"article","og_title":"INDIVIDUAL WITH LGMD: Anne - LGMD Awareness Foundation","og_description":"LGMD \u201cSpotlight Interview\u201d Name:\u00a0 Anne\u00a0 \u00a0Age:\u00a0 56 yrs. old\u00a0\u00a0 Country:\u00a0 […]","og_url":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/","og_site_name":"LGMD Awareness Foundation","article_publisher":"https:\/\/www.facebook.com\/LGMDawareness\/","article_published_time":"2018-06-03T21:24:02+00:00","og_image":[{"width":1200,"height":630,"url":"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/06\/LGMD-Logo_1200X630.png","type":"image\/png"}],"author":"dooley","twitter_card":"summary_large_image","twitter_creator":"@LgmdAwareness","twitter_site":"@LgmdAwareness","twitter_misc":{"Written by":"dooley","Est. reading time":"2 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/#article","isPartOf":{"@id":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/"},"author":{"name":"dooley","@id":"https:\/\/www.lgmd-info.org\/de\/#\/schema\/person\/007755074875959ad5503c1c969678c7"},"headline":"INDIVIDUAL WITH LGMD: Anne","datePublished":"2018-06-03T21:24:02+00:00","dateModified":"2018-06-03T21:24:02+00:00","mainEntityOfPage":{"@id":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/"},"wordCount":458,"publisher":{"@id":"https:\/\/www.lgmd-info.org\/de\/#organization"},"image":{"@id":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/#primaryimage"},"thumbnailUrl":"","keywords":["LGMD2A; Calpainopathy; United States"],"articleSection":["Individuals with LGMD - Interviews","LGMD2A"],"inLanguage":"it-IT"},{"@type":"WebPage","@id":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/","url":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/","name":"INDIVIDUAL WITH LGMD: Anne - LGMD Awareness Foundation","isPartOf":{"@id":"https:\/\/www.lgmd-info.org\/de\/#website"},"primaryImageOfPage":{"@id":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/#primaryimage"},"image":{"@id":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/#primaryimage"},"thumbnailUrl":"","datePublished":"2018-06-03T21:24:02+00:00","dateModified":"2018-06-03T21:24:02+00:00","breadcrumb":{"@id":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/#breadcrumb"},"inLanguage":"it-IT","potentialAction":[{"@type":"ReadAction","target":["https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/"]}]},{"@type":"ImageObject","inLanguage":"it-IT","@id":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/#primaryimage","url":"","contentUrl":""},{"@type":"BreadcrumbList","@id":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/www.lgmd-info.org\/de\/"},{"@type":"ListItem","position":2,"name":"INDIVIDUAL WITH LGMD: Anne"}]},{"@type":"WebSite","@id":"https:\/\/www.lgmd-info.org\/de\/#website","url":"https:\/\/www.lgmd-info.org\/de\/","name":"LGMD Awareness Foundation","description":"Information Hub for the LGMD community","publisher":{"@id":"https:\/\/www.lgmd-info.org\/de\/#organization"},"potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/www.lgmd-info.org\/de\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"it-IT"},{"@type":"Organization","@id":"https:\/\/www.lgmd-info.org\/de\/#organization","name":"LGMD Awareness Foundation, Inc.","url":"https:\/\/www.lgmd-info.org\/de\/","logo":{"@type":"ImageObject","inLanguage":"it-IT","@id":"https:\/\/www.lgmd-info.org\/de\/#\/schema\/logo\/image\/","url":"https:\/\/lgmd-info.org\/wp-content\/uploads\/2021\/02\/LGMD_Logo.png","contentUrl":"https:\/\/lgmd-info.org\/wp-content\/uploads\/2021\/02\/LGMD_Logo.png","width":208,"height":61,"caption":"LGMD Awareness Foundation, Inc."},"image":{"@id":"https:\/\/www.lgmd-info.org\/de\/#\/schema\/logo\/image\/"},"sameAs":["https:\/\/www.facebook.com\/LGMDawareness\/","https:\/\/x.com\/LgmdAwareness","https:\/\/www.instagram.com\/lgmdawareness\/"]},{"@type":"Person","@id":"https:\/\/www.lgmd-info.org\/de\/#\/schema\/person\/007755074875959ad5503c1c969678c7","name":"dooley","image":{"@type":"ImageObject","inLanguage":"it-IT","@id":"https:\/\/www.lgmd-info.org\/de\/#\/schema\/person\/image\/","url":"https:\/\/secure.gravatar.com\/avatar\/c87b3b784fd4c1975884b6c3eab282b5?s=96&d=mm&r=g","contentUrl":"https:\/\/secure.gravatar.com\/avatar\/c87b3b784fd4c1975884b6c3eab282b5?s=96&d=mm&r=g","caption":"dooley"},"sameAs":["https:\/\/live-lgmd-2021.pantheonsite.io"]}]}},"_links":{"self":[{"href":"https:\/\/www.lgmd-info.org\/it\/wp-json\/wp\/v2\/posts\/1980","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.lgmd-info.org\/it\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.lgmd-info.org\/it\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.lgmd-info.org\/it\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.lgmd-info.org\/it\/wp-json\/wp\/v2\/comments?post=1980"}],"version-history":[{"count":0,"href":"https:\/\/www.lgmd-info.org\/it\/wp-json\/wp\/v2\/posts\/1980\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.lgmd-info.org\/it\/wp-json\/"}],"wp:attachment":[{"href":"https:\/\/www.lgmd-info.org\/it\/wp-json\/wp\/v2\/media?parent=1980"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.lgmd-info.org\/it\/wp-json\/wp\/v2\/categories?post=1980"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.lgmd-info.org\/it\/wp-json\/wp\/v2\/tags?post=1980"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}