{"id":2361,"date":"2019-01-15T10:00:27","date_gmt":"2019-01-15T16:00:27","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2361"},"modified":"2019-01-15T10:00:27","modified_gmt":"2019-01-15T16:00:27","slug":"individual-with-lgmd-andrea","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2019\/01\/15\/individual-with-lgmd-andrea\/","title":{"rendered":"INDIVIDUO CON LGMD: Andrea"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

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

Nome<\/strong>: Andrea  Et\u00e0<\/strong>: 24 anni<\/p>\n\n\n\n

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

Sottotipo LGMD<\/strong>: LGMD2A - una forma di calpainopatia <\/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 11 anni.<\/p>\n\n\n\n

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

All'et\u00e0 di 8 anni, non riuscivo a stare in piedi con i talloni a terra e ho iniziato a camminare sulle punte poco dopo.\npoco dopo ho iniziato a camminare sulle punte. Seguirono debolezze alle spalle e ai fianchi.\nseguirono.<\/p>\n\n\n\n

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

No, sono l'unico membro della famiglia a cui \u00e8 stata diagnosticata la LGMD.<\/p>\n\n\n\n

Quali sono, secondo lei, le maggiori sfide\nnel vivere con la LGMD<\/strong>:<\/p>\n\n\n\n

Non poter usare Uber!<\/p>\n\n\n\n

La natura progressiva della malattia \u00e8 impegnativa. Ho\nho dovuto adattarmi alla perdita di alcune capacit\u00e0 nel corso del tempo, ed \u00e8 difficile\nsapere che queste perdite continueranno. Per esempio, da bambino potevo camminare,\nHo usato un Segway per spostarmi durante l'adolescenza e ora uso una sedia a rotelle.\nsedia a rotelle. Per me, gli adattamenti pi\u00f9 difficili sono stati non poter pi\u00f9\nnon essere pi\u00f9 in grado di visitare le case degli amici, perch\u00e9 quasi sempre hanno dei gradini, e non poter pi\u00f9\nnon poter pi\u00f9 suonare gli strumenti musicali che un tempo mi piacevano.<\/p>\n\n\n\n

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

Mi sento fortunata ad aver trovato un'area di studio all'universit\u00e0 che mi appassiona e che posso portare avanti con la LGMD. Sono orgogliosa di me stessa per essermi trasferita in un nuovo Stato per la scuola di specializzazione in biostatistica e per aver vissuto in modo indipendente. Ma di corso<\/g> diverse persone mi hanno aiutato lungo il percorso (vi voglio bene mamma e pap\u00e0 <\/g>:<\/g>).<\/p>\n\n\n\n

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

A volte la vita ci pone delle sfide che non possiamo cambiare,\nma il processo di gestione di queste sfide pu\u00f2 spesso essere molto gratificante.\nVivere con la LGMD mi ha reso una persona pi\u00f9 forte sotto molti aspetti, nonostante la debolezza fisica.\ndebolezza fisica. Mi ha anche insegnato il valore della vulnerabilit\u00e0 e dell'abbracciare la tristezza per vivere appieno la gioia.\ntristezza per vivere appieno la gioia. In realt\u00e0, forse il film \"Inside Out\" mi ha insegnato\nmi ha insegnato questo...<\/p>\n\n\n\n

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

Tutti dovrebbero guardare il discorso TED di Stella Young intitolato \"I am\nnon sono la vostra ispirazione, grazie mille\". L'autrice condivide un grande messaggio sullo\nsullo sfruttamento delle persone con disabilit\u00e0. Credo che la stragrande maggioranza di noi\ndi noi su questa terra stia facendo del suo meglio nonostante i vari traumi subiti.\nsubiti. Per quelli di noi con disabilit\u00e0 fisiche, il trauma \u00e8 solo un po' pi\u00f9\npi\u00f9 evidente a occhio nudo.<\/p>\n\n\n\n

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

Questa domanda \u00e8 la pi\u00f9 difficile per me. Non sono mai stato\ngeloso delle persone che corrono, fanno escursioni o vanno in palestra. Probabilmente\nprobabilmente andrei a scuola ma userei le scale invece dell'ascensore. Ma\n\u00e8 una risposta noiosa. Forse sarei pi\u00f9 drammatico; potrei vendere la mia sedia a rotelle\ne usare i soldi per portare la mia famiglia in Europa. Poter usare la toilette\nin aereo potrebbe essere emozionante. Ma mi mancherebbe il trattamento speciale che si ottiene\ndall'uso della sedia a rotelle. Essere diversi ha i suoi vantaggi.<\/p>\n\n\n\n

*** Vi preghiamo di mettere like, commentare e condividere questo post per contribuire ad aumentare la\nconsapevolezza della LGMD!<\/p>\n\n\n\n

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

LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name:  Andrea  Age: 24 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":2360,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-2361","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Andrea - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"http:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2019\/01\/15\/individual-with-lgmd-andrea\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Andrea - 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