{"id":1633,"date":"2017-11-06T10:00:14","date_gmt":"2017-11-06T16:00:14","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1633"},"modified":"2017-11-06T10:00:14","modified_gmt":"2017-11-06T16:00:14","slug":"fred","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2017\/11\/06\/fred\/","title":{"rendered":"INDIVIDUO CON LGMD: Fred"},"content":{"rendered":"

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

Nome<\/strong>: Fred \u00a0\u00a0Et\u00e0<\/strong>: 36 anni\"\"<\/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 13 anni.<\/p>\n

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

Ripensandoci, sono sempre stato un po' pi\u00f9 lento degli altri bambini, ma non posso dire che ci sia stato un sintomo che i miei genitori o io abbiamo notato. La diagnosi mi \u00e8 stata fatta per un caso fortuito. Ero andato a sciare con un gruppo della chiesa e alla fine mi sono rotto una gamba. Quando mi sono recato al pronto soccorso dell'ospedale per la frattura della gamba, un medico ha notato che non ero forte come avrei dovuto essere a quell'et\u00e0. Questo ha portato a una biopsia muscolare. Inizialmente mi \u00e8 stata diagnosticata la sindrome di Becker, prima del test del DNA.<\/p>\n

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

No, sono l'unico.<\/p>\n

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

La sfida pi\u00f9 grande per me \u00e8 non essere in grado di tenere in braccio il mio bambino di 7 mesi senza assistenza. Devo costantemente difendere la mia persona per quanto riguarda questa condizione. Non mi sono mai accorta di quanti atteggiamenti \"abili\" abbiano le persone. L'ultima per me sarebbe non poter visitare liberamente amici e familiari.<\/p>\n

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

Ho tanti successi, ma se potessi sceglierne solo uno direi che sono riuscita a uscire dal SSI. Dopo la diagnosi, avevo perso la speranza di avere un lavoro, un'auto, una casa, una famiglia mia, ecc. Oggi sono un'inviata della polizia di Stato, guido, ho una bella famiglia, sto cercando di acquistare la mia prima casa e sono ottimista sul fatto che quando arriver\u00e0 il momento in cui non potr\u00f2 pi\u00f9 fare fisicamente il lavoro che ho, Dio mi offrir\u00e0 un'altra opportunit\u00e0.<\/p>\n

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

La LGMD mi ha insegnato a lottare per ottenere ci\u00f2 che voglio. Mi ha insegnato che non sono mai cos\u00ec limitata come potrei pensare. Tutto \u00e8 possibile.<\/p>\n

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

La LGMD non \u00e8 ancora stata curata ma, con il loro aiuto, pu\u00f2 esserlo.<\/p>\n

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

Prendere in braccio il mio bambino, abbracciarlo forte, lanciarlo in aria e prenderlo.<\/p>\n

 <\/p>\n

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

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