{"id":2266,"date":"2018-09-24T12:51:12","date_gmt":"2018-09-24T17:51:12","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2266"},"modified":"2018-09-24T12:51:12","modified_gmt":"2018-09-24T17:51:12","slug":"rodrigo","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2018\/09\/24\/rodrigo\/","title":{"rendered":"Individuo con LGMD: Rodrigo"},"content":{"rendered":"

LGMD \"INTERVISTA SPOTLIGHT\"<\/strong><\/span><\/p>\n

Nome<\/strong><\/span>:\u00a0 Rodrigo\u00a0 Et\u00e0<\/strong>: 29 anni\u00a0\u00a0\"\"<\/a><\/span><\/p>\n

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

LGMD Sottotipo:\u00a0 <\/strong>LGMD2B \/ <\/span>Myoshi Miopatia<\/span><\/p>\n

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

Mi \u00e8 stata diagnosticata la LGMD2B all'et\u00e0 di 24 anni.<\/span><\/p>\n

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

I miei sintomi sono comparsi all'et\u00e0 di 17 anni.<\/span><\/p>\n

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

Ho due fratelli che presentano sintomi ma non sono stati diagnosticati.<\/span><\/p>\n

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

La mobilit\u00e0 \u00e8 la mia sfida pi\u00f9 grande.<\/span><\/p>\n

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

Il mio pi\u00f9 grande successo \u00e8 quello di aver permesso al mio talento artistico di venire alla luce.<\/span><\/p>\n

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

La LGMD mi ha influenzato molto nel diventare la persona che sono oggi. Mi ha permesso di vedere la vita in modo completamente diverso. Mi ha costretto a spingermi costantemente, anche per i compiti pi\u00f9 piccoli, e questo mi ha fatto diventare resiliente e persistente. Mi ha anche dato l'empatia e riesco a simpatizzare con chi sta lottando. La LGMD mi ha fatto apprezzare ogni aspetto della vita e mi ha fatto abbandonare i comportamenti materialistici.<\/span><\/p>\n

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

Il mondo, prima di tutto, deve sapere che esistiamo. La distrofia muscolare degli arti pu\u00f2 essere curata e lo sar\u00e0, ma non abbastanza persone ne sono a conoscenza per interessarsene. \u00c8 un bene che colpisca una piccola percentuale della popolazione, ma noi siamo un gruppo relativamente numeroso di persone che vogliono ancora farcela nella vita. Anche noi cerchiamo la felicit\u00e0, ma abbiamo bisogno di molto pi\u00f9 aiuto da parte degli altri. Il mondo deve sapere che stiamo ancora contribuendo con quello che possiamo. Facciamo fatica, anche solo a mettere un pezzo di pane in bocca, ma abbiamo accettato queste sfide ed essere forti \u00e8 diventato il nostro unico modo di vivere.<\/span><\/p>\n

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

Prenderei la strada pi\u00f9 veloce per la guarigione. Mi metterei a correre come fece Forest Gump. Direi a tutti quelli che incontrerei sul mio cammino quanto apprezzo il fatto di muovermi di nuovo, nel tentativo di sensibilizzare l'opinione pubblica sulla salute generale e di sottolineare quanto diamo per scontato. Ogni passo che una persona sana d\u00e0 per scontato, una persona con distrofia muscolare vorrebbe poterlo fare.<\/span><\/p>\n

 <\/p>\n

Per leggere altre \"interviste LGMD Spotlight\" o per proporsi come volontario per una prossima intervista, visitare il nostro sito web all'indirizzo https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/span><\/p>\n

 <\/p>\n

 <\/p>","protected":false},"excerpt":{"rendered":"

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