{"id":990,"date":"2015-08-18T11:15:27","date_gmt":"2015-08-18T16:15:27","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=990"},"modified":"2015-08-18T11:15:27","modified_gmt":"2015-08-18T16:15:27","slug":"martin","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2015\/08\/18\/martin\/","title":{"rendered":"INDIVIDUO CON LGMD: Martin"},"content":{"rendered":"

08\/18\/2015<\/strong><\/p>\n

Nome<\/strong>: Martin \u00a0ET\u00c0<\/strong>: 42 anni\"LGMD2A<\/a><\/p>\n

Paese<\/strong>: Regno Unito<\/p>\n

Sottotipo LGMD<\/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 23 anni.<\/p>\n

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

Ho avuto una caduta in un garage, mi sono slogato il ginocchio e questo non si \u00e8 riparato nel tempo previsto.<\/p>\n

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

S\u00ec, anche mio fratello maggiore ha la LGMD.<\/p>\n

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

Le mie sfide pi\u00f9 grandi sono salire le scale e cercare di far capire alle persone quanto sia difficile essere una persona disabile deambulante e determinata a rimanere in piedi il pi\u00f9 a lungo possibile. (e barcolla un po')<\/p>\n

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

Ho capito che potevo scrivere sulla distrofia muscolare e che le persone mi ascoltavano! Ho continuato a sensibilizzare l'opinione pubblica e a raccogliere fondi vitali per la ricerca, partecipando alle sedute del Parlamento, sensibilizzando personaggi dello sport e della televisione su queste patologie attraverso i social media, venendo riconosciuto e premiato da MDUK per tutti i miei sforzi di sensibilizzazione e di raccolta fondi per la ricerca, cambiando la mia carriera per essere in grado di aiutare gli altri, diventando pap\u00e0 di tre fantastiche bambine, cercando di essere un buon modello di comportamento e di rimanere sempre positivo.<\/p>\n

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

Per ironia della sorte, credo che la LGMD mi abbia reso pi\u00f9 forte di quanto avessi mai pensato di essere, sono estremamente determinata a far conoscere a tutti queste condizioni e a rendere la vita pi\u00f9 facile a molti altri in futuro.<\/p>\n

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

Il fatto che esista sarebbe un buon inizio! Solo dopo la mia diagnosi e anni dopo, quando ho iniziato a parlare di questa patologia, mi sono resa conto che la mia famiglia, i miei amici e la societ\u00e0 in generale non avevano sentito parlare di NESSUN tipo o ceppo di distrofia muscolare e questo deve cambiare; \u00e8 imperativo che la gente conosca queste condizioni.<\/p>\n

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

Correre su una spiaggia il pi\u00f9 velocemente possibile (pensando al film \"Chariots of fire\" e alla colonna sonora di Vangelis!) e poi avere un abbraccio fortissimo con tutte le mie ragazze e mia moglie.<\/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":"

08\/18\/2015 Name: Martin \u00a0AGE: 42 yrs. old Country: United Kingdom […]<\/p>","protected":false},"author":1,"featured_media":991,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,20],"class_list":["post-990","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-united-kingdom"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Martin<\/title>\n<meta name=\"description\" content=\"Martin, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his 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\/08\/18\/martin\/\" \/>\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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