{"id":5172,"date":"2021-05-17T20:23:28","date_gmt":"2021-05-17T20:23:28","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5172"},"modified":"2024-02-09T14:24:21","modified_gmt":"2024-02-09T14:24:21","slug":"5172","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2021\/05\/17\/5172\/","title":{"rendered":"INDIVIDUO CON LGMD: Maria"},"content":{"rendered":"
\"Lgmd1b<\/span><\/div>

\u00a0<\/strong><\/p>\n

Nome<\/strong>: Maria Et\u00e0<\/strong>: 29 anni<\/p>\n

Paese<\/strong>: STATI UNITI D'AMERICA<\/p>\n

Sottotipo LGMD<\/strong>: LGMD 1B<\/p>\n

 <\/p>\n

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

Inizialmente mi \u00e8 stata diagnosticata la SMA all'et\u00e0 di due anni. All'et\u00e0 di 15 anni mi \u00e8 stata nuovamente diagnosticata la distrofia muscolare degli arti.<\/p>\n

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

I miei genitori dicono che non ho camminato fino a 17 mesi. Camminavo anche a passo d'uomo e gi\u00e0 da bambino usavo le braccia per alzarmi da seduto.<\/p>\n

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

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

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

Mentalmente: Il presupposto che non viviamo una vita normale \u00e8 la sfida pi\u00f9 grande per me. Fisicamente: Imparare ad accettare la progressione quando noto che qualcosa si \u00e8 indebolito.<\/p>\n

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

Ottenere la patente e un'auto propria. Il processo \u00e8 durato due lunghi anni. Sembrava che non ci fosse mai una fine in vista. Avere la mia auto ha cambiato la mia vita e mi aiuta a rimanere il pi\u00f9 possibile indipendente.<\/p>\n

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

Ha sicuramente plasmato la mia personalit\u00e0 e ci\u00f2 che sono. La mia personalit\u00e0 feroce deriva dalla mia determinazione a dimostrare agli altri che siamo in grado di farlo. Il mio lato passionale deriva dal fatto che ho lottato fin dal primo giorno, anche da bambina. Crescere con una disabilit\u00e0 mi ha plasmato in molti modi che potrei immaginare. So che questa malattia mi ha trasformato nella Maria che tutti conoscono.<\/p>\n

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

Voglio che le persone sappiano che \u00e8 considerata una malattia rara e che non esiste un trattamento o una cura. Inoltre, voglio gridare dalle cime delle montagne che non si tratta di SM!<\/p>\n

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

Correrei a prendere i miei cinque nipoti. Andrei al centro commerciale e sceglierei un vestito senza dovermi preoccupare di essere troppo magra per entrare in qualcosa. E poi, probabilmente, andrei a giocare a putt putt. \u00c8 sicuramente una cosa che mi manca e che era una parte importante della mia infanzia. Mio padre portava me e le mie sorelle quasi ogni settimana da bambine e cos\u00ec \u00e8 diventata una delle mie cose preferite da fare.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5173,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,44],"tags":[],"class_list":["post-5172","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd1b"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD:\u00a0 Maria - 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\/2021\/05\/17\/5172\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD:\u00a0 Maria - 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