{"id":1026,"date":"2015-09-30T07:31:34","date_gmt":"2015-09-30T12:31:34","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1026"},"modified":"2015-09-30T07:31:34","modified_gmt":"2015-09-30T12:31:34","slug":"brad","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/","title":{"rendered":"INDIVIDUO CON LGMD: Brad"},"content":{"rendered":"

09\/30\/2015:<\/p>\n

Nome<\/strong>: Brad\u00a0 Et\u00e0<\/strong>: 51 anni\"LGMD2B<\/a><\/p>\n

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

Sottotipo LGMD<\/strong>: Miopatia LGMD2B\/Mioshi<\/p>\n

 <\/p>\n

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

Ho iniziato ad avere i primi sintomi a 18 anni. Ma solo dopo circa 10 anni un neurologo mi ha detto che avevo la Miyoshi. Poi ho dovuto aspettare altri 10 anni perch\u00e9 venisse scoperto il gene prima che ci fosse un modo per confermare che era quello che avevo.<\/p>\n

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

Non riuscivo a stare in piedi, inizialmente solo su un lato.<\/p>\n

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

No<\/p>\n

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

Che la pianificazione di un'attivit\u00e0 \u00e8 molto pi\u00f9 complessa. Molte attivit\u00e0 quotidiane (viaggiare, fare la spesa, andare al ristorante) comportano un numero maggiore di cose a cui prestare attenzione.<\/p>\n

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

Nel 2000 ho creato un sito web sulla disferlina (il gene per il mio sottotipo di LGMD). Non sapevo nulla di web design, ma volevo che altri pazienti avessero una fonte di informazioni sulla malattia e sulle ricerche in corso. Grazie a ci\u00f2, sono stata contattata dalla famiglia Jain dopo la diagnosi di uno dei loro figli: in seguito hanno dato vita alla Jain Foundation, che sostiene la ricerca sul mio sottotipo. Nel 2007 la Fondazione Jain ha organizzato la prima conferenza di ricerca sulla disferlina. Ho continuato a pizzicarmi per tutto il tempo pensando che non poteva essere vero: c'era davvero una conferenza dedicata a questa malattia!<\/p>\n

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

Credo che mi abbia reso pi\u00f9 premuroso e consapevole degli altri. Da giovane sono sempre stata molto indipendente, ma il fatto di aver bisogno di aiuto per alcune cose e di voler lavorare con altri per trovare cure per le LGMD mi ha insegnato l'importanza di chiedere aiuto quando se ne ha bisogno, di offrire aiuto quando si pu\u00f2 e di lavorare insieme.<\/p>\n

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

Innanzitutto, che esiste. Credo che molte persone abbiano l'idea che la MD colpisca solo i ragazzi giovani, o comunque i bambini. \u00c8 successo anche a me prima di iniziare ad avere i primi sintomi. Voglio che sappiano che esistono diversi tipi di MD e che i sintomi possono iniziare a qualsiasi et\u00e0.<\/p>\n

In secondo luogo, credo che la societ\u00e0 tenda a considerare la disabilit\u00e0 come una cosa in bianco e nero. Cio\u00e8, o si \u00e8 disabili e si ha bisogno di aiuto, o si sta completamente bene e non se ne ha bisogno. Ma per una patologia come la LGMD, in cui i sintomi spesso progrediscono lentamente, quando esattamente si diventa disabili? Penso che il modo in cui le cose sono impostate spesso scoraggi le persone che sono in grado di lavorare e che vogliono farlo, e di fare tutto il possibile nella loro vita.<\/p>\n

Voglio che altri pazienti sappiano che non sono soli. Quando ero all'universit\u00e0, ero estremamente preoccupata per la mia LGMD (che non era stata realmente diagnosticata), ma non sentivo di poterla condividere con nessuno. Molti anni dopo, ho incontrato un'altra paziente affetta da LGMD, che frequentava la stessa universit\u00e0 nel mio stesso periodo! Anche se la LGMD \u00e8 una malattia rara, ci sono altre persone l\u00e0 fuori ed \u00e8 bello entrare in contatto con loro.<\/p>\n

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

O pattinare sul ghiaccio o sciare. Prima di avere i sintomi ero una pattinatrice artistica a livello agonistico e sarebbe davvero bello poterlo fare di nuovo. Ho anche sciato molto quando ero pi\u00f9 giovane e mi piaceva molto.<\/p>\n

 <\/p>\n

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

09\/30\/2015: Name:\u00a0 Brad\u00a0 Age: 51 yrs. old Country: United States […]<\/p>","protected":false},"author":1,"featured_media":1027,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[23,55,16],"class_list":["post-1026","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b","tag-miyoshi-myopathy","tag-united-states"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Brad<\/title>\n<meta name=\"description\" content=\"Brad, diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his experience in living with this progressive neuro-muscular disease.\" \/>\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\/2015\/09\/30\/brad\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - Brad\" \/>\n<meta property=\"og:description\" content=\"Brad, diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his experience in living with this progressive neuro-muscular disease.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/\" \/>\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=\"2015-09-30T12:31:34+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=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/\"},\"author\":{\"name\":\"dooley\",\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#\/schema\/person\/007755074875959ad5503c1c969678c7\"},\"headline\":\"INDIVIDUAL WITH LGMD: Brad\",\"datePublished\":\"2015-09-30T12:31:34+00:00\",\"dateModified\":\"2015-09-30T12:31:34+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/\"},\"wordCount\":647,\"publisher\":{\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#organization\"},\"image\":{\"@id\":\"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/#primaryimage\"},\"thumbnailUrl\":\"\",\"keywords\":[\"LGMD2B\",\"Miyoshi Myopathy\",\"United States\"],\"articleSection\":[\"Individuals with LGMD - Interviews\",\"LGMD2B\"],\"inLanguage\":\"it-IT\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/\",\"url\":\"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/\",\"name\":\"LGMD Spotlight Interview - Brad\",\"isPartOf\":{\"@id\":\"https:\/\/www.lgmd-info.org\/de\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/#primaryimage\"},\"image\":{\"@id\":\"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/#primaryimage\"},\"thumbnailUrl\":\"\",\"datePublished\":\"2015-09-30T12:31:34+00:00\",\"dateModified\":\"2015-09-30T12:31:34+00:00\",\"description\":\"Brad, diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his experience in living with this progressive neuro-muscular disease.\",\"breadcrumb\":{\"@id\":\"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/#breadcrumb\"},\"inLanguage\":\"it-IT\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/\"]}]},{\"@type\":\"ImageObject\",\"inLanguage\":\"it-IT\",\"@id\":\"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/#primaryimage\",\"url\":\"\",\"contentUrl\":\"\"},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/www.lgmd-info.org\/de\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"INDIVIDUAL WITH LGMD: Brad\"}]},{\"@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":"LGMD Spotlight Interview - Brad","description":"Brad, diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his experience in living with this progressive neuro-muscular disease.","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\/2015\/09\/30\/brad\/","og_locale":"it_IT","og_type":"article","og_title":"LGMD Spotlight Interview - Brad","og_description":"Brad, diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his experience in living with this progressive neuro-muscular disease.","og_url":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/","og_site_name":"LGMD Awareness Foundation","article_publisher":"https:\/\/www.facebook.com\/LGMDawareness\/","article_published_time":"2015-09-30T12:31:34+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":"3 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"Article","@id":"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/#article","isPartOf":{"@id":"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/"},"author":{"name":"dooley","@id":"https:\/\/www.lgmd-info.org\/de\/#\/schema\/person\/007755074875959ad5503c1c969678c7"},"headline":"INDIVIDUAL WITH LGMD: Brad","datePublished":"2015-09-30T12:31:34+00:00","dateModified":"2015-09-30T12:31:34+00:00","mainEntityOfPage":{"@id":"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/"},"wordCount":647,"publisher":{"@id":"https:\/\/www.lgmd-info.org\/de\/#organization"},"image":{"@id":"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/#primaryimage"},"thumbnailUrl":"","keywords":["LGMD2B","Miyoshi Myopathy","United States"],"articleSection":["Individuals with LGMD - Interviews","LGMD2B"],"inLanguage":"it-IT"},{"@type":"WebPage","@id":"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/","url":"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/","name":"LGMD Spotlight Interview - Brad","isPartOf":{"@id":"https:\/\/www.lgmd-info.org\/de\/#website"},"primaryImageOfPage":{"@id":"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/#primaryimage"},"image":{"@id":"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/#primaryimage"},"thumbnailUrl":"","datePublished":"2015-09-30T12:31:34+00:00","dateModified":"2015-09-30T12:31:34+00:00","description":"Brad, diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his experience in living with this progressive neuro-muscular disease.","breadcrumb":{"@id":"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/#breadcrumb"},"inLanguage":"it-IT","potentialAction":[{"@type":"ReadAction","target":["https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/"]}]},{"@type":"ImageObject","inLanguage":"it-IT","@id":"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/#primaryimage","url":"","contentUrl":""},{"@type":"BreadcrumbList","@id":"https:\/\/www.lgmd-info.org\/ja\/individuals-with-lgmd-interviews\/2015\/09\/30\/brad\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/www.lgmd-info.org\/de\/"},{"@type":"ListItem","position":2,"name":"INDIVIDUAL WITH LGMD: Brad"}]},{"@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\/1026","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=1026"}],"version-history":[{"count":0,"href":"https:\/\/www.lgmd-info.org\/it\/wp-json\/wp\/v2\/posts\/1026\/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=1026"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.lgmd-info.org\/it\/wp-json\/wp\/v2\/categories?post=1026"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.lgmd-info.org\/it\/wp-json\/wp\/v2\/tags?post=1026"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}