{"id":1403,"date":"2017-01-28T09:30:12","date_gmt":"2017-01-28T15:30:12","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1403"},"modified":"2017-01-28T09:30:12","modified_gmt":"2017-01-28T15:30:12","slug":"brenda","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2017\/01\/28\/brenda\/","title":{"rendered":"INDIVIDUO CON LGMD: Brenda"},"content":{"rendered":"<p>Intervista a riflettori accesi sulla LGMD<\/p>\n<p><strong>Nome<\/strong>:  Brenda\u00a0 <strong>Et\u00e0<\/strong>:  55 anni<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2017\/01\/LGMD2A-Brenda.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1404 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2017\/01\/LGMD2A-Brenda-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Paese<\/strong>:  Stati Uniti<\/p>\n<p><strong>Sottotipo LGMD<\/strong>:  LGMD2A - nota anche come Calpainopatia<\/p>\n<p>&nbsp;<\/p>\n<p><strong>A che et\u00e0 \u00e8 stata fatta la diagnosi<\/strong>:<\/p>\n<p>Mi \u00e8 stata diagnosticata all'et\u00e0 di 50 anni.<\/p>\n<p><strong>Quali sono stati i primi sintomi<\/strong>:<\/p>\n<p>I primi sintomi sono stati: cadute, caduta del polso, andatura insolita quando si cammina con le anche in avanti, crampi alle gambe e rapida perdita di peso.<\/p>\n<p><strong>Avete altri familiari affetti da LGMD:<\/strong><\/p>\n<p>Nessun altro membro della famiglia \u00e8 affetto da LGMD.<\/p>\n<p><strong>Quali sono, secondo lei, le sfide pi\u00f9 grandi da affrontare nella convivenza con la LGMD?<\/strong>:<\/p>\n<p>La sfida pi\u00f9 grande nel vivere con la LGMD \u00e8 che sembro normale e la malattia \u00e8 per sempre.<\/p>\n<p><strong>Qual \u00e8 il suo pi\u00f9 grande risultato<\/strong>:<\/p>\n<p>Tra i miei pi\u00f9 grandi successi ci sono: lo sci sulle Alpi, il sea-kayak sulla costa atlantica, il sea-kayak sul lago Champlain e il rollerblade nello Stato del Vermont.  Inoltre, ho cresciuto una figlia sana di 17 anni e sono sposata da 25 anni con un marito eccezionale che mi ama profondamente, nonostante tutto!  Da 22 anni lavoro anche come direttore ricreativo dell'unico resort a 5 stelle del Vermont.<\/p>\n<p><strong>In che modo la LGMD l'ha influenzata nel diventare la persona che \u00e8 oggi:<\/strong><\/p>\n<p>Ho un atteggiamento positivo e mi mantengo sana e felice, qualunque cosa accada.<\/p>\n<p><strong>Cosa volete che il mondo sappia della LGMD?<\/strong>:<\/p>\n<p>Voglio dire a tutti che sono ancora la stessa Brenda che ballava ogni volta che ne avevo l'occasione e faceva le capriole e le curve all'indietro sulla spiaggia sabbiosa di Gay Head Cliffs a Martha's Vineyard.  Quella che \u00e8 stata la prima a fare lo slalom con gli sci d'acqua, la prima a praticare lo sci alpino, lo sci di fondo e il telemark e la prima a sciare sulle Alpi in Europa.  Il primo a sciare la parete di testa del monte Washington, Tuckerman's Ravine.  Il primo a sciare tutte le piste nere e a doppio diamante nero del Killington ski Resort nel Vermont, comprese tutte le piste del bosco per 30 anni.  Non permetter\u00f2 mai a questa malattia di etichettarmi o di portarmi a letto.  Il Dr. Anthony Amato mi ha detto \"Buona e lunga vita\" a 50 anni, quando mi \u00e8 stata diagnosticata la malattia.  Voglio far sapere al mondo che una persona con disabilit\u00e0 \u00e8 proprio come te!<\/p>\n<p><strong>Se la vostra LGMD potesse essere \"curata\" domani, quale sarebbe la prima cosa che vorreste fare?<\/strong>:<\/p>\n<p>Ballare con mio marito senza fatica.  Sciare sulle piste di neve fresca con curve perfette.  Camminare su una spiaggia sabbiosa senza affaticarsi.  Camminare di nuovo a un buon ritmo senza dolori articolari o cadute del polso.  Andare in bicicletta con le signore e riuscire a tenere il passo.  Andare in bici con le ruote grasse sulla neve.<\/p>\n<p>Per leggere altre \"interviste LGMD Spotlight\" o per proporsi come volontari per una prossima intervista, visitate il nostro sito web: <a href=\"https:\/\/www.lgmd-info.org\/it\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD &#8220;Spotlight Interview&#8221; Name:\u00a0 Brenda\u00a0 Age:\u00a0 55 yrs. old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1404,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-1403","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":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>INDIVIDUAL WITH LGMD: Brenda - 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\/01\/28\/brenda\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Brenda - LGMD Awareness Foundation\" \/>\n<meta property=\"og:description\" content=\"LGMD &#8220;Spotlight Interview&#8221; 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