{"id":1293,"date":"2016-08-17T12:31:33","date_gmt":"2016-08-17T17:31:33","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1293"},"modified":"2016-08-17T12:31:33","modified_gmt":"2016-08-17T17:31:33","slug":"melanie","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2016\/08\/17\/melanie\/","title":{"rendered":"INDIVIDUO CON LGMD: Melanie"},"content":{"rendered":"

Intervista a riflettori accesi sulla LGMD<\/p>\n

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NOME<\/strong>: Melania \u00a0 ET\u00c0<\/strong>: 33\"LGMD2B<\/a><\/div>\n<\/div>\n
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PAESE:<\/strong> STATI UNITI D'AMERICA<\/span><\/span><\/div>\n<\/div>\n
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Sottotipo LGMD<\/strong>: LGMD2b (Disferlinopatia\/Miopatia di Mioshi) <\/span><\/span><\/div>\n<\/div>\n
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\u00a0<\/span><\/strong><\/div>\n<\/div>\n
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A CHE ET\u00c0 LE \u00c8 STATA DIAGNOSTICATA:<\/strong><\/div>\n<\/div>\n
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Mi \u00e8 stata diagnosticata una settimana prima del mio 29\u00b0 compleanno.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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QUALI SONO STATI I PRIMI SINTOMI: <\/span><\/span><\/strong><\/div>\n<\/div>\n
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Non riuscivo ad alzarmi sulle dita dei piedi, avevo le dita a martello (deformit\u00e0 del piede) ed ero sempre dolorante e affaticata.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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HA ALTRI FAMILIARI AFFETTI DA LGMD:<\/strong> <\/span><\/span><\/div>\n<\/div>\n
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No, nemmeno uno!<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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QUAL \u00c8, SECONDO LEI, LA SFIDA PI\u00d9 GRANDE NEL VIVERE CON LA LGMD: <\/span><\/span><\/strong><\/div>\n<\/div>\n
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La perdita della capacit\u00e0 di svolgere le attivit\u00e0 quotidiane ha reso la vita piuttosto impegnativa. Bisogna pianificare in anticipo ogni piccola cosa. Inoltre, diventa difficile quando le persone non capiscono questo fatto. Quando non sembrate malati, le persone non prendono sul serio le vostre esigenze.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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QUAL \u00c8 IL SUO PI\u00d9 GRANDE RISULTATO: <\/span><\/span><\/strong><\/div>\n<\/div>\n
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Ottenere un master e assicurarmi un ottimo lavoro nel governo federale (pur essendo malato ogni giorno).<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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IN CHE MODO LA LGMD L'HA INFLUENZATA NEL DIVENTARE LA PERSONA CHE \u00c8 OGGI: <\/span><\/span><\/strong><\/div>\n<\/div>\n
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Dopo la prima diagnosi mi sono sentita impotente e sola. Non conoscevo nessun'altra persona con questa forma di MD ed ero spaventata. Invece di tenere il broncio o di lasciarmi abbattere, ho pensato: \"Perch\u00e9 non uscire e fare qualcosa?\". Cos\u00ec ho iniziato a informarmi sull'MDA e su come raccogliere fondi. Ho fondato una squadra di camminata muscolare MDA e da allora ne ho una ogni anno. Poi ho deciso che avrei fatto tutto il possibile finch\u00e9 potevo (visto che sto perdendo la capacit\u00e0 di camminare). E cos\u00ec ho fatto. Ho viaggiato dappertutto e in alcuni luoghi da sola. Ho persino fatto sky diving. Credo che questa diagnosi mi abbia reso una persona ancora pi\u00f9 positiva. Sicuramente mi ha reso una persona ancora pi\u00f9 forte. Molte delle esperienze che ho vissuto negli ultimi 4 anni sono il risultato diretto del fatto che ho affrontato la LGMD e che ho dimostrato che le probabilit\u00e0 erano sbagliate.<\/div>\n<\/div>\n
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\u00a0<\/span><\/strong><\/div>\n<\/div>\n
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COSA VUOLE CHE IL MONDO SAPPIA DELLA LGMD:<\/span><\/span><\/strong><\/div>\n<\/div>\n
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Innanzitutto, non ci definisce. Siamo ci\u00f2 che siamo, e ci capita di avere questa terribile malattia. In secondo luogo, il fatto che il nostro aspetto sia sano non significa che ci sentiamo bene. Terzo, la distrofia muscolare non \u00e8 la SM.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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SE LA VOSTRA LGM POTESSE ESSERE \"CURATA\" DOMANI, QUALE SAREBBE LA PRIMA COSA CHE FARESTE.<\/span><\/span><\/strong><\/div>\n<\/div>\n
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Ballare come facevo io! Poi fare escursioni in tutti i Parchi Nazionali e scattare un sacco di fotografie meravigliose. Poi correre una maratona o fare una gara a ostacoli.<\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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\u00a0<\/span><\/div>\n<\/div>\n
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Per leggere altre \"interviste LGMD Spotlight\" o per proporsi come volontario per una prossima intervista, visitate il nostro sito web: https:\/\/www.lgmd-info.org\/spotlight-interviews. <\/span><\/span><\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"

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