{"id":1446,"date":"2017-04-08T12:30:56","date_gmt":"2017-04-08T17:30:56","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1446"},"modified":"2017-04-08T12:30:56","modified_gmt":"2017-04-08T17:30:56","slug":"darlene","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2017\/04\/08\/darlene\/","title":{"rendered":"INDIVIDUO CON LGMD: Darlene"},"content":{"rendered":"<p><strong>LGMD \"INTERVISTA SPOTLIGHT\"<\/strong><\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>Nome<\/strong>:  Darlene\u00a0\u00a0\u00a0 <strong>Et\u00e0<\/strong>: 65 anni<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2017\/04\/Non-Dysferlin-Miyoshi-Myopathy.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1445 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\/04\/Non-Dysferlin-Miyoshi-Myopathy-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Paese<\/strong>:   Stati Uniti<\/p>\n<p><strong>Sottotipo LGMD<\/strong>:    Miopatia non disferlinica di Miyoshi<\/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 64 anni.<\/p>\n<p><strong>Quali sono stati i primi sintomi<\/strong>:<\/p>\n<p>A posteriori, mi rendo conto che i sintomi sono iniziati intorno ai 40 anni o anche prima.  Sono sempre stato attivo, ma con il passare degli anni abilit\u00e0 come la corsa, lo sci e il pattinaggio sono diventate sempre pi\u00f9 difficili, cos\u00ec ho praticato altre attivit\u00e0 come la bicicletta, i kettlebell, i pesi e l'allenamento CrossFit.  Ho affrontato i sintomi della Raynaud vestendomi pi\u00f9 pesantemente.  Un visibile deperimento muscolare nei polpacci, all'inizio dei 60 anni, ha dato inizio al mio viaggio di un anno verso la diagnosi.  A quel punto, l'80-90% di entrambi i muscoli gastrocnemio era stato sostituito dal grasso.<\/p>\n<p><strong>Avete altri familiari affetti da LGMD:<\/strong><\/p>\n<p>No, ma due sorelle hanno\/hanno avuto il diabete giovanile.  Una \u00e8 morta per complicazioni cardiache dovute alla malattia a 53 anni.  L'altra, ora 58enne e in condizioni di salute precarie, ha subito un impianto di rene\/pancreas a 39 anni.<\/p>\n<p><strong>Quali sono, secondo lei, le sfide pi\u00f9 grandi da affrontare nella convivenza con la LGMD?<\/strong>:<\/p>\n<p>In qualit\u00e0 di co-proprietario di una palestra di CrossFit, cerco costantemente di trovare il giusto equilibrio tra il lavorare abbastanza duramente per sfidare e mantenere i miei muscoli sani forti e mobili, ma non cos\u00ec duramente da distruggere i miei muscoli a rischio.  Finora, l'impatto della malattia \u00e8 stato minimo sulla mia vita: continuo a sembrare, sentirmi e muovermi pi\u00f9 giovane della media dei 65enni.  Cerco di concentrarmi su ci\u00f2 che sono in grado di fare ogni giorno e di ricordare a me stesso che tutti, non solo io, affrontano una condizione degenerativa progressiva chiamata invecchiamento.<\/p>\n<p><strong>Qual \u00e8 il suo pi\u00f9 grande risultato<\/strong>:<\/p>\n<p>Crescere con sorelle diabetiche mi ha fatto capire l'importanza di una buona alimentazione e di un regolare esercizio fisico.  Ho capito che ci\u00f2 che metto in bocca \u00e8 importante e che un sonno adeguato e il recupero dallo stress sono essenziali, indipendentemente dal disturbo.  Anche se non posso sapere con certezza che le sane abitudini aiutano a ridurre i miei sintomi, scelgo di credere che lo facciano e continuer\u00f2 a essere il pi\u00f9 proattiva possibile in questo senso.  Come allenatore, sono in grado di modellare le pratiche salutari eccellenti e di lavorare a stretto contatto con i nostri membri in modo che possano trarne i benefici.  Sono diventato allenatore di CrossFit all'et\u00e0 di 60 anni (dopo una carriera di 35 anni come giornalista di giornale) ed \u00e8 gratificante che gli altri ti dicano che li hai aiutati a cambiare la loro vita in meglio.<\/p>\n<p><strong>In che modo la LGMD l'ha influenzata nel diventare la persona che \u00e8 oggi:<\/strong><\/p>\n<p>Decenni prima della mia diagnosi ufficiale, limitazioni fisiche sconcertanti mi hanno spinto a trovare altri modi per essere attiva e contribuire in una comunit\u00e0 di atleti competitivi di resistenza all'aperto.  Essere resiliente, fisicamente attiva e forte \u00e8 una parte della mia identit\u00e0 che mi impegner\u00f2 a mantenere finch\u00e9 ne sar\u00f2 in grado.  Conto su questa mentalit\u00e0 per affrontare qualsiasi incertezza mi riservi il futuro.<\/p>\n<p><strong>Cosa volete che il mondo sappia della LGMD?<\/strong>:<\/p>\n<p>La distrofia muscolare \u00e8 una malattia rara con infinite varianti individuali.  Poich\u00e9 non esiste una cura e le aziende farmaceutiche hanno pochi incentivi finanziari per trovarne una, la diagnosi \u00e8 spesso la fine dell'interesse degli operatori sanitari nei vostri confronti.  Trovate sostegno dove potete e siate i vostri difensori.<\/p>\n<p><strong>Se la vostra LGMD potesse essere \"curata\" domani, quale sarebbe la prima cosa che vorreste fare?<\/strong>:<\/p>\n<p>Mi piacerebbe molto praticare lo sci di fondo.  Viviamo su un sistema di sentieri che si collega alla pista da sci American Birkebeiner, lunga 54 chilometri, e mi piacerebbe provare l'emozione di scivolare con grazia lungo le colline e le valli di questo bellissimo percorso boschivo.<\/p>\n<p>&nbsp;<\/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 \u201cSPOTLIGHT INTERVIEW\u201d \u00a0 Name:\u00a0 Darlene\u00a0\u00a0\u00a0 Age: \u00a0\u00a065 yrs. old [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1445,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[73],"class_list":["post-1446","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-non-dysferlin-miyoshi-myopathy-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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