{"id":1382,"date":"2016-10-26T14:12:37","date_gmt":"2016-10-26T19:12:37","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1382"},"modified":"2016-10-26T14:12:37","modified_gmt":"2016-10-26T19:12:37","slug":"amie","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2016\/10\/26\/amie\/","title":{"rendered":"INDIVIDUO CON LGMD: Amie"},"content":{"rendered":"

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

Nome<\/strong>: Amie\u00a0 Et\u00e0<\/strong>: 31 anni\"lgmd2j-amie\"<\/a><\/p>\n

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

Sottotipo LGMD<\/strong>: LGMD2J (Titinopatia)<\/p>\n

 <\/p>\n

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

A 31 anni mi \u00e8 stata appena diagnosticata la LGMD2J, nota anche come titinopatia.<\/p>\n

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

Ho sempre avuto problemi con le gambe e con la deambulazione, ma mi \u00e8 sempre stato detto che era colpa dei tendini d'Achille corti. Dopo essere stata operata per allungarli, i miei polpacci si sono atrofizzati. I miei muscoli centrali sembravano deboli e ho sempre pensato che fosse colpa di due parti cesarei. Solo quest'anno il mio corpo \u00e8 cambiato drasticamente diventando debole e non potevo pi\u00f9 ignorarlo, cos\u00ec ho deciso di trovare delle risposte.<\/p>\n

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

Nessun familiare noto soffre di questa malattia.<\/p>\n

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

La mia LGMD presenta molte sfide. Faccio fatica ogni giorno con le \"normali\" attivit\u00e0 quotidiane: attraversare una stanza, alzarmi da una posizione seduta, salire un gradino o una salita, salire su un camion, piegarmi, stare in equilibrio, ecc. A volte pu\u00f2 essere frustrante. Mi perdo molte cose a causa del dolore costante che provo. Se faccio troppe cose (che non sono poi molte), mi sento a terra per giorni. Devo scegliere cosa \u00e8 importante e cosa no. Tutto questo si ripercuote anche sulla vita della mia famiglia, di cui porto il peso. La LGMD mi ha tolto un po' di libert\u00e0 e questo \u00e8 difficile da affrontare, ma cerco di mantenere una mentalit\u00e0 positiva!<\/p>\n

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

Il mio pi\u00f9 grande risultato \u00e8 essere mamma, moglie e sorella! Ho due splendide figlie, un marito fantastico e la famiglia pi\u00f9 solidale che si possa desiderare. Sono loro la ragione per cui rimango positiva e \"combatto come una ragazza\"! Per tutta la vita ho sempre voluto essere una mamma e avere una famiglia amorevole! Sono decisamente benedetta!<\/p>\n

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

Anche se la mia diagnosi \u00e8 abbastanza recente, ho sempre saputo che qualcosa non andava nel profondo. In realt\u00e0 mi sono autodiagnosticata la LGMD prima di ottenere una diagnosi dal mio neurologo. Cos\u00ec, quando sono arrivati i risultati degli esami, ho provato un imbarazzante senso di gioia. Finalmente avevo una diagnosi! Sento che questa malattia mi \u00e8 stata data per un motivo a cui non ho ancora trovato una risposta. Credo davvero che tutto accada per una ragione e che il tempismo sia tutto. La LGMD \u00e8 una malattia cos\u00ec rara che \u00e8 decisamente sconosciuta nella mia zona, per cui mi impegner\u00f2 a fare pi\u00f9 ricerche possibili e a fare da avvocato a quante pi\u00f9 persone possibile. So di essere forte anche se i miei muscoli non lo sono. Mi godo le piccole cose della vita e vivo i momenti! Cerco anche il positivo in ogni situazione. La vita \u00e8 troppo breve per concentrarsi sulle cose negative!<\/p>\n

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

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

Voglio che il mondo sappia che 1 persona su 43.000 \u00e8 affetta da distrofia muscolare della cintura degli arti. Purtroppo non esiste una cura per questa malattia. A causa della sua rarit\u00e0, ci sono meno fondi per la ricerca, il che mi impedisce di ottenere una cura. La LGMD pu\u00f2 insinuarsi in qualsiasi famiglia e ha effetti quotidiani sulle vite. Alla fine prevedo che questa malattia mi toglier\u00e0 la capacit\u00e0 di camminare, ma ho intenzione di combatterla il pi\u00f9 a lungo possibile!<\/p>\n

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

Da dove inizio? Porterei le mie figlie a Disney World e poi a fare escursioni in Colorado! Camminerei su una rampa di scale solo perch\u00e9 potrei! Mi mancano le piccole cose che facevo, come fare shopping, ballare o persino fare il bagno! Non ci si rende conto della libert\u00e0 che si perde finch\u00e9 non la si perde!<\/p>\n

 <\/p>\n

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

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