{"id":3464,"date":"2020-08-24T19:35:11","date_gmt":"2020-08-25T00:35:11","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3464"},"modified":"2024-02-09T14:24:34","modified_gmt":"2024-02-09T14:24:34","slug":"dylan","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2020\/08\/24\/dylan\/","title":{"rendered":"INDIVIDUO CON LGMD: Dylan"},"content":{"rendered":"
\"\"<\/figure><\/div>\n\n\n\n

Intervista con i riflettori della LGMD<\/strong><\/p>\n\n\n\n

Nome<\/strong>: Dylan                                  Et\u00e0<\/strong>: 28 anni<\/p>\n\n\n\n

Paese<\/strong>: Stati Uniti d'America<\/p>\n\n\n\n

Sottotipo LGMD<\/strong>: LGMD 2J \/ R10 legato alla titina<\/p>\n\n\n\n

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

Mi \u00e8 stata diagnosticata all'et\u00e0 di 23 anni.<\/p>\n\n\n\n

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

Ho iniziato a notare che le cose \"normali\" diventavano sempre pi\u00f9 difficili da fare: salire le rampe di scale, alzarsi dopo essersi seduti sul pavimento, saltare e accovacciarsi. Avevo un costante affaticamento muscolare e cadevo a caso. Quando ho perso la capacit\u00e0 di correre e le cadute sono diventate pi\u00f9 frequenti, abbiamo capito che c'era qualcosa che non andava.<\/p>\n\n\n\n

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

No, non \u00e8 vero. Sono l'unico e il solo!<\/p>\n\n\n\n

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

\u00c8 una malattia crudele perch\u00e9 non solo ci toglie naturalmente la forza e la mobilit\u00e0, ma cerca anche di toglierci la speranza e il controllo sulla nostra vita. Mentre i nostri corpi si deteriorano quotidianamente senza alcun trattamento o cura in vista, \u00e8 facile sentirsi sconfitti e trascurati. Credo che questa sia una delle sfide pi\u00f9 grandi: mantenere la testa fuori dall'acqua. Ecco perch\u00e9 \u00e8 particolarmente importante rimanere positivi e vivere la vita al meglio delle proprie possibilit\u00e0, a prescindere da ci\u00f2 che sembra!<\/p>\n\n\n\n

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

Sono stato incredibilmente fortunato e fortunato a poter viaggiare per il Paese (44 Stati) suonando con alcuni dei migliori musicisti del mondo. Non so per quanto tempo ancora potr\u00f2 farlo, ma \u00e8 stato un sogno che si \u00e8 realizzato. Sono anche un orgoglioso laureato della Texas Christian University (Go Frogs) e da ragazzo sono stato campione statale di scacchi. Penso anche di essere un buon padre di cane!<\/p>\n\n\n\n

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

Mi insegna cose nuove ogni singolo giorno. In cos\u00ec poco tempo ho acquisito la prospettiva di una vita intera. Sono diventato un miglior risolutore di problemi. Sono molto pi\u00f9 paziente con me stessa e con gli altri. Apprezzo ogni momento e ogni singolo passo che mi rimane. Sorrido di pi\u00f9, guardo le nuvole e tratto tutti con gentilezza. Cerco di essere l'eroe di qualcuno. Oltre a soffrire di LGMD, sono l'uomo pi\u00f9 fortunato del mondo, con la migliore famiglia e i migliori amici che si possano desiderare.<\/p>\n\n\n\n

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

Che siamo persone con obiettivi, aspirazioni, passioni e sentimenti, proprio come tutti gli altri. Molti di noi un tempo erano anche piuttosto \"normali\". Se tutti sapessero quali ostacoli e difficolt\u00e0 devono superare le persone con LGMD per poter svolgere la loro normale routine quotidiana, le persone comincerebbero a capire quanto sia forte e resistente la nostra comunit\u00e0. Si renderebbero conto che si tratta di una comunit\u00e0 e di una malattia per cui vale la pena lottare. Quindi, siate un sostenitore mentre i ricercatori e gli scienziati cercano di risolvere queste misteriose malattie!<\/p>\n\n\n\n

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

Correrei in giardino con il mio cane, ballerei con una donna carina e simpatica, giocherei a baseball con i miei amici e probabilmente scalerei una montagna solo perch\u00e9!<\/p>\n\n\n\n

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

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