{"id":1580,"date":"2017-09-22T12:01:04","date_gmt":"2017-09-22T17:01:04","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1580"},"modified":"2017-09-22T12:01:04","modified_gmt":"2017-09-22T17:01:04","slug":"hillary","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2017\/09\/22\/hillary\/","title":{"rendered":"INDIVIDUO CON LGMD: Hillary"},"content":{"rendered":"

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

NOME:<\/strong>\u00a0 Hillary \u00a0\u00a0ET\u00c0:<\/strong>\u00a0 32 anni\"\"<\/a><\/span><\/p>\n

PAESE:<\/strong>\u00a0 STATI UNITI D'AMERICA<\/span><\/p>\n

LGMD Sottotipo:<\/strong>\u00a0 LGMD2A \/ Calpainopatia<\/span><\/p>\n

 <\/p>\n

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

Mi \u00e8 stata diagnosticata all'et\u00e0 di 13 anni.<\/span><\/p>\n

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

I miei primi sintomi sono stati tendini d'Achille stretti, archi alti e una corsa lenta. Ho iniziato a correre proprio come mio fratello maggiore, al quale \u00e8 stata diagnosticata la LGMD2A nello stesso periodo.<\/span><\/p>\n

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

S\u00ec, anche mio fratello maggiore (5 anni pi\u00f9 grande) ha la LGMD2A.<\/span><\/p>\n

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

La cosa pi\u00f9 difficile della LGMD2A \u00e8 che cambia continuamente. Negli ultimi 20 anni ho trovato modi creativi per svolgere le attivit\u00e0 quotidiane. Compiti semplici come andare in bagno in modo indipendente hanno dovuto essere adattati e ricreati molte volte. A un certo punto ho usato gli avambracci, la fronte e i maniglioni per arrampicarmi letteralmente sul muro dalla posizione seduta sul water. Poich\u00e9 la malattia \u00e8 in continua evoluzione, le mie soluzioni funzionano solo per qualche anno e poi mi tocca ricominciare da capo per trovare qualcosa di nuovo.<\/span><\/p>\n

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

La mia famiglia \u00e8 la mia pi\u00f9 grande realizzazione. Mi sono sposata all'et\u00e0 di 23 anni, quando ero ancora molto abile. Nel giro di 9 brevi anni, ora sono una persona in sedia a rotelle a tempo pieno. Io e mio marito abbiamo avuto il privilegio di adottare due bellissimi bambini. Mio marito e i miei due figli sono tutto per me. La vita non \u00e8 sempre facile, ma con questi tre bambini al mio fianco (o sulle mie ginocchia) mi viene ricordato quanto sia bella la vita. Quando mi \u00e8 stata diagnosticata la malattia, mi sono sempre preoccupata di come avrei rincorso i miei figli o di come li avrei salvati dalla corsa in strada. Non mi sarei mai immaginata su una sedia a rotelle a rincorrerli! Sapevate che le sedie a rotelle possono andare fino a 7 miglia all'ora?! Invece non avevo nulla di cui preoccuparmi. Sono in grado di lavorare part-time da casa e di conciliare le mie responsabilit\u00e0 di moglie e madre.<\/span><\/p>\n

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

A 13 anni giocavo a basket, pallavolo e softball. Lo sport era tutto per me. Come si pu\u00f2 immaginare, la diagnosi \u00e8 stata uno shock totale e per un po' ho rifiutato. Durante le selezioni per la squadra di pallavolo giovanile, rimasi completamente scioccata dal fatto che i miei allenatori pensassero che non fossi in grado di tenere il passo. Hanno deciso di farmi giocare, ma alla fine della stagione ho accettato il fatto di non essere veloce come le mie compagne di squadra. Questo fu un duro colpo dal punto di vista emotivo. Per fortuna, grazie all'influenza dei miei genitori e dei miei amici, decisi di provare nuove cose e mi candidai al governo studentesco e fui redattore dello staff dell'annuario. Tenermi occupata mi ha aiutato e ho trovato nuove cose che mi piacevano. Le esperienze e le opportunit\u00e0 che ho avuto mi hanno aiutato a ottenere una borsa di studio per l'universit\u00e0 e mi hanno portato ad avere altre opportunit\u00e0 di leadership nel mio campus universitario. Inoltre, ho avuto l'opportunit\u00e0 di lavorare nel settore alberghiero negli ultimi 14 anni e ora ho una posizione che mi permette di lavorare da casa. Tenermi occupata \u00e8 sempre stato uno dei migliori rimedi per la mia salute mentale e, ad essere sincera, non ricordo un momento in cui non sono stata occupata!<\/span><\/p>\n

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

La sensibilizzazione sulle malattie rare non \u00e8 mai un compito facile. Quando vedete i vigili del fuoco fuori da Filling the Boot o vedete gli Shamrocks nelle aziende locali, continuate a donare. Il denaro aiuta a portare avanti la ricerca e a mandare i bambini al campo MDA. Spero che la ricerca in corso oggi cambier\u00e0 le vite.<\/span><\/p>\n

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

La prima cosa che farei \u00e8 rincorrere i miei figli, lanciarli in aria e giocare fino a stordirmi!<\/span><\/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<\/span> \u00a0https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>\n

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

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