{"id":5635,"date":"2022-02-08T04:21:00","date_gmt":"2022-02-08T04:21:00","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5635"},"modified":"2024-02-09T14:23:56","modified_gmt":"2024-02-09T14:23:56","slug":"individual-with-lgmd-john","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2022\/02\/08\/individual-with-lgmd-john\/","title":{"rendered":"INDIVIDUO CON LGMD: John"},"content":{"rendered":"

\"<\/p>\n

Nome<\/strong>: Giovanni\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Et\u00e0<\/strong>: 28 anni<\/p>\n

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

Sottotipo LGMD<\/strong>: LGMD 2J\/R10 legato alla titina<\/p>\n

 <\/p>\n

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

All'et\u00e0 di 10 anni mi \u00e8 stata diagnosticata la sindrome di Becker. Verso gli 11 o 12 anni mi \u00e8 stata poi diagnosticata una miopatia mitocondriale. Nel 2016 mi \u00e8 stata diagnosticata la LGMD e nel 2021 \u00e8 stata confermata geneticamente la LGMD2J\/R10.<\/p>\n

Quali sono stati i primi SINTOMI?<\/strong><\/p>\n

All'et\u00e0 di 5 anni avevo difficolt\u00e0 a camminare correttamente. Provavo un forte dolore al polpaccio quando facevo esercizio fisico e avevo difficolt\u00e0 a tenere il passo con gli altri bambini.<\/p>\n

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

Anche mio fratello ha la LGMD2J.<\/p>\n

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

Le sfide pi\u00f9 grandi sono la perdita della capacit\u00e0 di fare le cose che amo e la necessit\u00e0 di trovare ripetutamente nuovi hobby a causa della progressiva debolezza. \u00c8 difficile da affrontare. Ora sto anche scoprendo che le attivit\u00e0 quotidiane sono difficili o impossibili da portare a termine in modo indipendente senza l'aiuto della mia fantastica moglie, Christina. Purtroppo, a causa della natura della mia disabilit\u00e0 e del dispositivo di mobilit\u00e0 che utilizzo, vengo spesso discriminato e mi viene negato l'accesso ad alcuni luoghi pubblici.<\/p>\n

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

Sposare la mia bellissima moglie, Christina, e laurearmi in chimica.<\/p>\n

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

La malattia ha davvero plasmato la persona che sono oggi, mettendomi alla prova, permettendomi di incontrare altri membri della comunit\u00e0 dei disabili e spingendomi a diventare l'avvocato che sono oggi. La limitazione delle mie capacit\u00e0 fisiche mi ha reso una persona pi\u00f9 creativa nel risolvere i problemi e mi ha insegnato molto sulla pazienza. A volte la malattia mi fa sentire come se mi stesse abbattendo, ma \u00e8 importante per me ricordare che non sono sola nella lotta per ottenere un vero trattamento per patologie come la mia.<\/p>\n

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

Vorrei che ci fosse una maggiore consapevolezza dell'impatto che una patologia come la LGMD pu\u00f2 avere sulla vita di una persona, sulla sua salute mentale e sulle sue aspettative di vita. Vorrei che gli altri si rendessero conto della gravit\u00e0 della progressione della malattia, ma anche dell'utile lotta che tutti noi dobbiamo intraprendere prima o poi contro le malattie croniche e rare.<\/p>\n

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

A mani basse, salirei su una moto da cross e pedalerei per giorni! Andavo spesso in moto quando ero pi\u00f9 giovane, ma ora non sono pi\u00f9 abbastanza forte. Ci penso ancora ogni giorno.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5636,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,66],"tags":[78],"class_list":["post-5635","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2j","tag-lgmd2j-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: John - 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\/2022\/02\/08\/individual-with-lgmd-john\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: John - 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