{"id":615,"date":"2015-04-29T08:06:42","date_gmt":"2015-04-29T13:06:42","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=615"},"modified":"2015-04-29T08:06:42","modified_gmt":"2015-04-29T13:06:42","slug":"alicia","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2015\/04\/29\/alicia\/","title":{"rendered":"INDIVIDUO CON LGMD: Alicia"},"content":{"rendered":"

04\/29\/2015<\/p>\n

Nome:<\/strong>\u00a0 Alicia<\/p>\n

Et\u00e0<\/strong>: 38 anni\"LGMD2A<\/a><\/p>\n

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

Sottotipo LGMD<\/strong>: LGMD2A \/ Calpainopatia<\/p>\n

 <\/p>\n

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

Mi \u00e8 stata diagnosticata all'et\u00e0 di 35 anni dopo anni e anni di diagnosi errate.<\/p>\n

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

Camminare e correre sulle punte dei piedi e salire le scale sono stati i primi sintomi.<\/p>\n

Ha altri familiari affetti da LGMD: No<\/strong><\/p>\n

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

Una delle sfide pi\u00f9 grandi per me \u00e8 stata quella di trovare medici istruiti sulla LGMD e sulle sfide e i sintomi che accompagnano la malattia. Molti medici non hanno preso sul serio i miei problemi (dolori muscolari, perdita di forza, problemi a camminare\/scalare le scale) o hanno pensato che avessi una malattia autoimmune prima di trovare un medico che mi ha finalmente inviato alla Mayo Clinic. Dopo un EMG, esami del sangue e una biopsia muscolare mi \u00e8 stata finalmente diagnosticata, ma ci sono voluti molti anni e molti medici per arrivare al punto in cui mi trovo.<\/p>\n

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

Crescere due figlie straordinarie con mio marito da 14 anni \u00e8 stato un traguardo e una benedizione. Insegnare loro la gentilezza e ad essere pi\u00f9 empatiche nei confronti delle persone, dato che non conosciamo mai veramente le difficolt\u00e0 di chi ci circonda.<\/p>\n

In che modo la LGMD l'ha influenzata nel diventare la persona che \u00e8 oggi: \u00a0<\/strong><\/p>\n

Mi ha insegnato a essere pi\u00f9 gentile, ad ascoltare di pi\u00f9 e a ridere ogni giorno. A volte tutto ci\u00f2 che si pu\u00f2 fare \u00e8 ridere.<\/p>\n

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

Che attualmente non esistono trattamenti o cure per la LGMD e che se avete un familiare o un amico a cui \u00e8 stata diagnosticata, vi invitiamo a informarvi sulla malattia. Potrebbe significare molto per qualcuno.<\/p>\n

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

Ballare tutta la notte!<\/p>","protected":false},"excerpt":{"rendered":"

04\/29\/2015 Name:\u00a0 Alicia Age:\u00a0 38 yrs. old Country: United States […]<\/p>","protected":false},"author":1,"featured_media":616,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,16],"class_list":["post-615","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-united-states"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Alicia<\/title>\n<meta name=\"description\" content=\"Alicia, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares her 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\/04\/29\/alicia\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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