{"id":158,"date":"2015-02-06T22:26:15","date_gmt":"2015-02-07T04:26:15","guid":{"rendered":"http:\/\/mainstay-bg.com\/wp\/?p=158"},"modified":"2015-02-06T22:26:15","modified_gmt":"2015-02-07T04:26:15","slug":"jose-antonio","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2015\/02\/06\/jose-antonio\/","title":{"rendered":"INDIVIDUO CON LGMD: Jos\u00e9 Antonio"},"content":{"rendered":"

02\/06\/2015:\"LGMD2B<\/a><\/p>\n

NOME<\/strong>: Jos\u00e9 Antonio<\/p>\n

ET\u00c0:<\/strong> 48<\/p>\n

PAESE:<\/strong> Messico<\/p>\n

LGMD Sottotipo:<\/strong> LGMD 2B\/Disferlinopatia<\/p>\n

A che et\u00e0 \u00e8 stata fatta la diagnosi:<\/strong> all'et\u00e0 di 46 anni<\/p>\n

QUALI SONO STATI I PRIMI SINTOMI:<\/strong>
\nHo notato per la prima volta la debolezza muscolare all'et\u00e0 di 30 anni. Mi \u00e8 stato riscontrato un problema cardiaco all'aorta e il cardiologo ha pensato che la debolezza muscolare fosse dovuta a questo. Ho fatto un EMG e i risultati sono stati buoni, ma continuavo a cadere, a sbattere contro le cose, a non avere forza nelle gambe per salire le scale o nelle braccia per sollevare oggetti pesanti. Credo che il sintomo pi\u00f9 allarmante sia stato quando ho scoperto che non riuscivo a saltare, allora ho capito che qualcosa non andava.<\/p>\n

HA ALTRI MEMBRI DELLA FAMIGLIA CHE HANNO LA LGMD: No <\/strong>
\nQUALI SONO, SECONDO LEI, LE MAGGIORI SFIDE NEL VIVERE CON LA LGMD:<\/strong>
\nTutto! Una volta che le persone mi aiutano ad alzarmi dal letto, devo salire su una sedia speciale per andare in bagno, poi le persone devono sollevarmi per farmi salire su una sedia a rotelle. Faccio fisioterapia dal luned\u00ec al venerd\u00ec. Il fisioterapista mi solleva con una cintura e io cammino con lui per circa 10 metri pi\u00f9 volte. Mi fa flettere le braccia con pesi da 1 kg, poi mi solleva nel mio veicolo e mi porta sul posto di lavoro dove rimango nel mio veicolo. La cosa pi\u00f9 triste \u00e8 che guardo i miei figli crescere e non posso andare con loro a godermi le cose semplici: spiaggia, cinema, parchi, ecc. \u00c8 mia moglie a farlo; \u00e8 molto devota a me e mi aiuta molto.<\/p>\n

QUAL \u00c8 IL SUO PI\u00d9 GRANDE RISULTATO:<\/strong>
\nPoter rimanere in contatto con i miei clienti e continuare a lavorare a modo mio.<\/p>\n

IN CHE MODO LA LGMD L'HA INFLUENZATA NEL DIVENTARE LA PERSONA CHE \u00c8 OGGI<\/strong>:
\nHo imparato ad apprezzare le persone che mi aiutano, ad avere pazienza, a mantenere la speranza e a non sentirmi depressa, a essere grata per tutto, a capire le persone che non sono nella mia stessa situazione e che si trovano in una situazione difficile, a dare valore a ci\u00f2 che ho e a essere una risparmiatrice, a dare pi\u00f9 amore alla mia famiglia ogni giorno come se fosse l'ultimo.
\nCOSA VUOLE CHE IL MONDO SAPPIA DELLA LGMD:<\/strong>
\nQuanto \u00e8 difficile realizzare piccole cose che sono insignificanti per le altre persone, perch\u00e9 sappiano di queste malattie rare e perch\u00e9 ci sia pi\u00f9 interesse a studiare perch\u00e9 si manifestano e come si possono evitare. Anche una diagnosi precoce, in modo che i pazienti possano assumere vitamine per evitare problemi di salute, perch\u00e9 quando diventiamo meno mobili il nostro corpo si indebolisce e il nostro sistema immunitario si indebolisce. Infine, e soprattutto, trovare un trattamento o una cura per questa malattia!<\/p>\n

SE LA VOSTRA LGM POTESSE ESSERE \"CURATA\" DOMANI, QUALE SAREBBE LA PRIMA COSA CHE VORRESTE FARE:<\/strong>
\nCamminare sulla spiaggia, correre, salire le scale, viaggiare con i miei figli senza che loro debbano preoccuparsi di me. Porterei mia moglie a mangiare in un bel posto e la ringrazierei per tutto l'amore che ha per me, essendo in grado di aiutarmi e di prendersi cura di me. Abbracciare i miei figli per ringraziarli di tutto il sostegno che mi danno ogni giorno.<\/p>","protected":false},"excerpt":{"rendered":"

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