{"id":1440,"date":"2017-03-25T10:00:37","date_gmt":"2017-03-25T15:00:37","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1440"},"modified":"2017-03-25T10:00:37","modified_gmt":"2017-03-25T15:00:37","slug":"cecilia","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2017\/03\/25\/cecilia\/","title":{"rendered":"INDIVIDUO CON LGMD: Cecilia"},"content":{"rendered":"

Intervista a LGMD Spotlight<\/strong><\/p>\n

Nome:<\/strong> Cecilia \u00a0\u00a0ET\u00c0:<\/strong> 36 anni\"\"<\/a><\/p>\n

Paese:<\/strong> Argentina<\/p>\n

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

 <\/p>\n

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

Mi \u00e8 stata diagnosticata all'et\u00e0 di 12 anni.<\/p>\n

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

Ho iniziato a camminare sulle punte dei piedi. Inoltre, fin da quando ero piccolo, mia madre ha notato che avevo reazioni ritardate, ad esempio nel rincorrere una palla.<\/p>\n

Ha altri familiari affetti da LGMD?<\/strong><\/p>\n

No, sono l'unica in famiglia con la LGMD.<\/p>\n

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

La sfida pi\u00f9 grande \u00e8 stata abituarsi ai primi cambiamenti, alle prime cose che non potevo pi\u00f9 fare: per esempio, salire le scale e alzarmi dal pavimento. In una fase pi\u00f9 avanzata, elaborare strategie per potersi alzare dal letto, da una sedia, ecc. e poi, elaborare il lutto per la perdita della capacit\u00e0 di camminare e iniziare a usare una sedia a rotelle o uno scooter a tempo parziale o a tempo pieno.<\/p>\n

Inoltre, \u00e8 stata una sfida trovare l'equilibrio e conoscere i limiti del mio corpo. Sapere fino a che punto potevo spingermi senza esaurirmi, decidere cosa fare da sola e quando chiedere aiuto.<\/p>\n

La cosa positiva \u00e8 che ho imparato ad accettare i cambiamenti, a essere intelligente e creativo, a pensare a soluzioni per fare le cose in altri modi e a cercare alternative.<\/p>\n

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

Il mio pi\u00f9 grande risultato \u00e8 che ho sempre realizzato ci\u00f2 che volevo e continuo a farlo. La mia famiglia ha un grande merito: mi ha sempre insegnato che la malattia non \u00e8 una barriera o una scusa, che tutto \u00e8 possibile se si riesce a \"trovare un modo\", che c'\u00e8 un percorso alternativo, che pu\u00f2 avere degli ostacoli, ma che ci porter\u00e0 alla nostra meta.<\/p>\n

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

Se non avessi avuto questa malattia non sarei la persona che sono. Le sfide mi hanno fatto crescere e diventare forte. Non nego ci\u00f2 che non posso fare e le circostanze che mi condizionano. Ho sviluppato la capacit\u00e0 di affrontare con un atteggiamento positivo i cambiamenti che si verificano. So che in qualche modo le cose si risolvono sempre.<\/p>\n

Questo ha influenzato la mia carriera professionale e il settore in cui ho scelto di lavorare. Lavoro in organizzazioni non governative per i diritti delle persone con disabilit\u00e0, soprattutto per quanto riguarda l'accessibilit\u00e0 fisica. Inoltre, qui in Argentina, faccio parte dell'Associazione per la distrofia muscolare e scrivo articoli per incoraggiare chi vive situazioni di disabilit\u00e0.<\/p>\n

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

    \n
  1. Che questa malattia, come molte altre, non rende le persone inferiori agli altri.<\/li>\n
  2. Per abbattere i miti, come quello secondo cui siamo deboli e fragili.<\/li>\n
  3. Superare i pregiudizi.<\/li>\n
  4. Che ci siano uguali diritti: che si possa studiare, lavorare, innamorarsi e realizzare tante cose.<\/li>\n<\/ol>\n

    Sono una persona determinata a vivere una vita piena. Non \u00e8 questo che tutti cercano?<\/p>\n

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

    Posso immaginare cos\u00ec tante cose! Niente di speciale, ma solo riconnettermi con il mio corpo: correre, saltare, salire le scale, andare in bicicletta, giocare con mio nipote sul pavimento, andare in tutti i posti in cui non sono potuta entrare.<\/p>\n

    E chiaramente avrei pi\u00f9 spinta per continuare ad aiutare coloro che sono ancora in attesa di una cura! Sono parte di tutto questo.<\/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":"

    LGMD Spotlight Interview Name: Cecilia \u00a0\u00a0AGE: 36 years Country: Argentina […]<\/p>","protected":false},"author":1,"featured_media":1439,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[72],"class_list":["post-1440","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-argentina"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Cecilia - 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=\"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2017\/03\/25\/cecilia\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Cecilia - 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