{"id":419,"date":"2015-03-12T21:50:04","date_gmt":"2015-03-13T02:50:04","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=312"},"modified":"2015-03-12T21:50:04","modified_gmt":"2015-03-13T02:50:04","slug":"donavon","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2015\/03\/12\/donavon\/","title":{"rendered":"INDIVIDUO CON LGMD: Donavon"},"content":{"rendered":"

03\/12\/2015:<\/p>\n

Nome<\/strong>: Donavon\u00a0 Et\u00e0<\/strong>: 52\"LGMD2D<\/a><\/p>\n

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

Sottotipo LGMD<\/strong>: LGMD2D<\/p>\n

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

Mi \u00e8 stata diagnosticata all'et\u00e0 di 16 anni<\/p>\n

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

Non sono mai stata in grado di correre molto velocemente e avevo problemi a salire le scale. Per una parte del tempo vivevamo in una fattoria e quando si trattava di fare le faccende domestiche non ero in grado di sollevare un sacco pieno di mangime.<\/p>\n

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

S\u00ec, ho quattro sorelle e due nipoti affette da LGMD.<\/p>\n

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

Tutto l'aiuto di cui ho avuto bisogno nel corso degli anni e che continua ad aumentare ogni anno. Sono molto grato alla mia grande moglie e ai grandi amici che mi hanno aiutato nel corso degli anni. Mia sorella Monica \u00e8 morta nel 2012 a causa delle complicazioni della LGMD, quindi questo pensiero \u00e8 sempre presente nella mia mente, sapendo che sto diventando pi\u00f9 debole.<\/p>\n

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

Essere la prima persona a sottoporsi a una terapia genica per la distrofia muscolare. Ho chiamato un medico ogni mese dopo l'identificazione del mio difetto genetico e quando hanno iniziato la prima sperimentazione mi sono offerto volontario. La terapia genica mi ha aperto molte opportunit\u00e0: ho testimoniato al Senato degli Stati Uniti. Ho contribuito a fare pressione sul primo MD Care Act a Washington DC. Ho anche fatto parte di un comitato di supervisione del National Institutes of Health per sei anni.<\/p>\n

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

A causa della mia LGMD credo di aver dovuto lottare di pi\u00f9 per ottenere un lavoro... alcune persone sentono che ho la distrofia muscolare o mi vedono su una sedia a rotelle e pensano che non sia in grado di fare nulla. Di conseguenza, ho sviluppato un approccio molto determinato e ottimista in molti aspetti della mia vita. Vedo le altre persone disabili in modo diverso, perch\u00e9 conosco alcune delle difficolt\u00e0 che affrontano quotidianamente. Sono grata di essere cristiana perch\u00e9 un giorno, se non ci sar\u00e0 una cura mentre sono in vita, non ci saranno malattie in Paradiso.<\/p>\n

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

Credo che siamo molto vicini a un trattamento o a una cura. Ho partecipato al primo studio di terapia genica nel 1999 e sono molto entusiasta di vedere l'inizio del prossimo studio di terapia genica che utilizzer\u00e0 il sistema sanguigno per veicolare il nuovo vettore.<\/p>\n

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

Guidare un'auto o un pick-up invece di guidare un furgone. Un giorno mi piacerebbe avere un'altra Pontiac GTO.<\/p>","protected":false},"excerpt":{"rendered":"

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