{"id":1059,"date":"2015-11-30T11:36:31","date_gmt":"2015-11-30T17:36:31","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1059"},"modified":"2015-11-30T11:36:31","modified_gmt":"2015-11-30T17:36:31","slug":"molly","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2015\/11\/30\/molly\/","title":{"rendered":"INDIVIDUO CON LGMD: Molly"},"content":{"rendered":"

11\/30\/2015<\/p>\n

NOME<\/strong>: Molly\u00a0\u00a0 \u00a0ET\u00c0<\/strong>: 29 anni\"LGMD2B<\/a><\/p>\n

PAESE:<\/strong>\u00a0 Stati Uniti<\/p>\n

Sottotipo LGMD<\/strong>: LGMD2B: disferlinopatia\/Miopatia di Mioshi<\/p>\n

 <\/p>\n

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

Ho iniziato a presentare i sintomi all'et\u00e0 di 17 anni e all'epoca mi fu detto che ero affetta da Guillain-Barre. A 19 anni i sintomi iniziali sono tornati e si sono aggravati, ma questa volta mi \u00e8 stata diagnosticata la polimiosite. Dopo 3 anni di ricoveri, all'et\u00e0 di 22 anni mi \u00e8 stata diagnosticata la miopatia di Miyoshi attraverso il test del DNA.<\/p>\n

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

I miei primi sintomi sono stati la difficolt\u00e0 a salire le scale e ad alzarmi dalle sedie. All'et\u00e0 di 15 anni ho notato un calo significativo dell'attivit\u00e0 sportiva, ma ho pensato che si trattasse di pigrizia adolescenziale. Solo quando ero al terzo anno di liceo e non riuscivo a completare l'educazione fisica e iniziavo a cadere frequentemente, ho capito che c'era un problema.<\/p>\n

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

Non ho altri familiari affetti da LGMD.<\/p>\n

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

Alcune delle sfide pi\u00f9 grandi sono quelle di vedere amici e familiari partecipare ad attivit\u00e0 fisiche come la corsa, l'escursionismo, l'esercizio quotidiano e persino la danza. Mi rattrista non poter partecipare con loro e a volte mi sembra di perdere del tempo di qualit\u00e0. Un'altra lotta forse pi\u00f9 dura \u00e8 quella quotidiana: ci vuole molto pi\u00f9 impegno per prepararsi ogni mattina e anche per portare a termine compiti quotidiani che molti danno per scontati, come sistemare la propria stanza, pulire la casa, fare il bucato, ecc. Ho dovuto imparare a mettere da parte il mio orgoglio e ad affidarmi di pi\u00f9 agli amici e alla famiglia, il che \u00e8 gi\u00e0 di per s\u00e9 una sfida.<\/p>\n

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

Credo che il mio pi\u00f9 grande risultato sia che, nonostante sia entrata e uscita dall'ospedale durante gli anni dell'universit\u00e0, ho continuato a lavorare e alla fine mi sono laureata. Ora metto a frutto quella laurea ogni giorno come insegnante. Insegnare \u00e8 sempre stato il mio sogno e l'ho realizzato. I miei studenti e i miei colleghi mi sostengono e ne vale la pena ogni singolo giorno.<\/p>\n

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

La LGMD mi ha reso una persona pi\u00f9 determinata. Con uno scopo nella mia vita, ma anche con chi mi circonda. Quando si vive con una patologia che influisce sulla vita di tutti i giorni, \u00e8 importante circondarsi di persone e di attivit\u00e0 che abbiano un significato e realizzino la propria vita, senza perdere tempo in cose futili e inconsistenti. Non sono sicuro che me ne sarei reso conto cos\u00ec presto se non fosse stato per ci\u00f2 che vivo ogni giorno.<\/p>\n

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

Innanzitutto voglio che tutti smettano di pensare che io abbia una strana forma di sclerosi multipla. Voglio anche che tutti sappiano che noi, come comunit\u00e0, siamo preziosi e abbiamo molto da offrire. I nostri corpi possono non collaborare con noi, ma siamo una comunit\u00e0 molto brillante e appassionata. Inoltre, vorrei che il mondo sapesse che la LGMD esiste, ma credo che stiamo facendo grandi passi avanti in questo campo.<\/p>\n

 <\/p>\n

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

Ci sono tante cose che vorrei fare e ovviamente la maggior parte di esse ha a che fare con capacit\u00e0 fisiche che non possiedo. Mi piacerebbe percorrere l'Appalachian Trail, o qualsiasi altra cosa che implichi stare all'aperto per lunghi periodi di tempo. O, e mi piacerebbe anche saltare di nuovo, c'\u00e8 qualcosa di liberatorio in questo.<\/p>\n

Per leggere altre \"Interviste Spotlight LGMD\" o per proporsi come volontario per una prossima intervista, visitate il nostro sito web all'indirizzo: https:\/\/www.lgmd-info.org\/spotlight-interviews.<\/p>","protected":false},"excerpt":{"rendered":"

11\/30\/2015 NAME:\u00a0 Molly\u00a0\u00a0 \u00a0AGE: 29 years old COUNTRY:\u00a0 United States […]<\/p>","protected":false},"author":1,"featured_media":1060,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[21,23,55,16],"class_list":["post-1059","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-dysferlinopathy","tag-lgmd2b","tag-miyoshi-myopathy","tag-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Molly - 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\/2015\/11\/30\/molly\/\" \/>\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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