{"id":411,"date":"2015-01-30T21:57:44","date_gmt":"2015-01-31T03:57:44","guid":{"rendered":"http:\/\/mainstay-bg.com\/wp\/?p=136"},"modified":"2015-01-30T21:57:44","modified_gmt":"2015-01-31T03:57:44","slug":"136","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2015\/01\/30\/136\/","title":{"rendered":"INDIVIDUO CON LGMD: Carol"},"content":{"rendered":"

01\/30\/2015\"c1\"<\/a><\/p>\n

NOME:<\/strong> Carol<\/p>\n

ET\u00c0<\/strong>: 53<\/p>\n

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

Sottotipo LGMD<\/strong>: LGMD 2A \/ Calpainopatia<\/p>\n

A CHE ET\u00c0 LE \u00c8 STATA DIAGNOSTICATA<\/b>:<\/p>\n

Mi \u00e8 stata diagnosticata la LGMD all'et\u00e0 di 9 anni, ma ho ricevuto la conferma genetica della LGMD2A solo all'et\u00e0 di 51 anni.<\/p>\n

QUALI SONO STATI I PRIMI SINTOMI<\/b>:<\/p>\n

Da bambina avevo la tendenza a camminare sulle punte dei piedi. All'et\u00e0 di 9 anni, a causa delle contratture, non riuscivo pi\u00f9 ad appoggiare i talloni a terra. Cominciai a sviluppare un'andatura un po' \"a zampa d'elefante\" e avevo anche difficolt\u00e0 a correre e a salire le scale.<\/p>\n

AVETE ALTRI MEMBRI DELLA FAMIGLIA CHE HANNO<\/b>GMD: <\/b><\/p>\n

No, sono l'unico di cui siamo a conoscenza.<\/p>\n

QUALI SONO, SECONDO LEI, LE MAGGIORI SFIDE DA AFFRONTARE NELLA CONVIVENZA CON <\/b>LGMD<\/b>:<\/p>\n

Affrontare la progressione continua di questa malattia \u00e8 sempre una sfida. Una delle sfide pi\u00f9 grandi, per\u00f2, \u00e8 quella di dover dipendere da altri per la maggior parte delle attivit\u00e0 quotidiane. Ho bisogno di qualcuno che mi aiuti a vestirmi, ad andare in bagno, a fare il bagno, ecc. \u00c8 molto difficile perdere la propria indipendenza!<\/p>\n

QUAL \u00c8 IL SUO PI\u00d9 GRANDE RISULTATO<\/b>:<\/p>\n

Sono stata nominata \"sciatrice d'acqua disabile dell'anno\" nel 2000-2001 dal Rehab Institute of Chicago (RIC). Ma in tutta onest\u00e0, il mio pi\u00f9 grande risultato \u00e8 vivere uno stile di vita produttivo e attivo nonostante le sfide che incontro quotidianamente a causa della mia diagnosi di LGMD. Ho lavorato per oltre 20 anni come terapista occupazionale (OTR), sono felicemente sposata e sono molto impegnata nella mia chiesa e nella comunit\u00e0.<\/p>\n

IN CHE MODO LA LGMD L'HA INFLUENZATA NEL DIVENTARE LA PERSONA CHE \u00c8 OGGI<\/b>:<\/b><\/p>\n

La LGMD mi ha reso pi\u00f9 forte come persona nonostante la mia debolezza fisica. Vivere con la LGMD mi ha aiutato a rendermi conto e ad accettare il fatto che tutti hanno delle sfide nella loro vita. Sfortunatamente, la mia LGMD \u00e8 pi\u00f9 evidente o visibile... ma mi ha anche aiutato a capire che tutti noi abbiamo doni o qualit\u00e0 speciali che pi\u00f9 che compensano le sfide. Ho imparato l'importanza di concentrarmi e apprezzare le cose che posso fare piuttosto che soffermarmi su quelle che non posso fare. Mi ha anche permesso di trovare le benedizioni nella mia vita e di apprezzare anche i doni pi\u00f9 piccoli. Grazie a tutto questo, sono diventata una sostenitrice e un modello per molti che lottano con una disabilit\u00e0 o una sfida nella loro vita... e questo \u00e8 in parte dovuto alla mia LGMD.<\/p>\n

COSA VOLETE CHE IL MONDO SAPPIA<\/b> LGMD<\/b>:<\/p>\n

Attualmente non esiste alcun trattamento o cura per la LGMD. La natura implacabile di questa rara malattia continua a renderci sempre pi\u00f9 deboli.... anche quando si pensa che sia impossibile diventare pi\u00f9 deboli! Storicamente, la LGMD attira un numero significativamente inferiore di fondi per la ricerca rispetto ad altre forme di distrofia muscolare e quindi un numero minore di ricercatori che lavorano per comprendere la malattia e scoprire una cura. Questa situazione deve cambiare! Abbiamo bisogno di pi\u00f9 fondi e pi\u00f9 ricerca per scoprire una cura e un trattamento per tutte le forme di LGMD.<\/p>\n

SE LA VOSTRA LGM POTESSE ESSERE \"CURATA\" DOMANI, QUALE SAREBBE LA PRIMA COSA CHE VORRESTE FARE?<\/b>: Vorrei correre da mio marito e stringere le braccia intorno a lui per abbracciarlo! Poi, andare a correre su una spiaggia sabbiosa.<\/p>","protected":false},"excerpt":{"rendered":"

01\/30\/2015 NAME: Carol AGE: 53 COUNTRY: United States LGMD Sub-Type: […]<\/p>","protected":false},"author":1,"featured_media":254,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,16],"class_list":["post-411","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-united-states"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Carol<\/title>\n<meta name=\"description\" content=\"Carol, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares her experience in living with this progressive neuro-muscular disease.\" \/>\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\/2015\/01\/30\/136\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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