{"id":1463,"date":"2017-06-07T10:06:12","date_gmt":"2017-06-07T15:06:12","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1463"},"modified":"2017-06-07T10:06:12","modified_gmt":"2017-06-07T15:06:12","slug":"jill","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2017\/06\/07\/jill\/","title":{"rendered":"INDIVIDUO CON LGMD: Jill"},"content":{"rendered":"

Intervista a riflettori accesi sulla LGMD<\/strong><\/p>\n

NOME:<\/strong> Jill ET\u00c0: 42\"\"<\/a>
\nPAESE<\/strong>: STATI UNITI D'AMERICA
\nSottotipo LGMD<\/strong>distrofia muscolare di Emery-Dreifuss autosomica dominante (mutazione LMNA\/LGMD1B)<\/p>\n

A CHE ET\u00c0 \u00c8 STATA FATTA LA DIAGNOSI<\/strong>:
\nMi \u00e8 stata diagnosticata all'et\u00e0 di 4 anni.<\/p>\n

QUALI SONO STATI I PRIMI SINTOMI:<\/strong>
\nAlla nascita ero esile e le mie zie ricordano di aver pensato che non c'era abbastanza grasso e muscoli sul sedere e sulle gambe. Le mie tappe iniziali non erano significative; ero in grado di sedermi, gattonare, camminare, ecc. a un'et\u00e0 adeguata. Quando sono entrata nella scuola materna, si \u00e8 notato che cadevo molto pi\u00f9 spesso degli altri bambini e che avevo difficolt\u00e0 a stare al passo con gli altri. Ricordo di aver avuto grandi difficolt\u00e0 a rimanere in piedi in una \"casa gonfiabile\" al luna park, e inoltre non mi piacevano gli autoscontri perch\u00e9 avevo difficolt\u00e0 con la debolezza del collo.<\/p>\n

HA ALTRI FAMILIARI AFFETTI DA LGMD:<\/strong>
\nMio padre, due fratelli e una sorella sono tutti affetti da EDMD, ma con un'ampia variet\u00e0 di gravit\u00e0. Una sorella non ne \u00e8 affetta. Si sospetta che anche la mia nonna paterna e la mia bisnonna abbiano ereditato questo disturbo, ma era cos\u00ec lieve che non se ne sono mai accorti durante la loro vita.<\/p>\n

QUALI SONO, SECONDO LEI, LE MAGGIORI SFIDE NEL VIVERE CON LA LGMD:<\/strong>
\nMi sento frustrata perch\u00e9 voglio fare le cose che una persona della mia et\u00e0 dovrebbe essere in grado di fare senza grandi difficolt\u00e0. Ad esempio, occuparmi delle faccende domestiche \u00e8 molto impegnativo e alla fine non riesco a dare alla casa l'aspetto che immagino debba avere dopo aver lavorato sodo.<\/p>\n

QUAL \u00c8 IL SUO PI\u00d9 GRANDE RISULTATO:<\/strong>
\nIl mio pi\u00f9 grande risultato \u00e8 stato scoprire la mia diagnosi da adolescente e informare il cardiologo di mio padre che la nostra malattia genetica richiedeva l'impianto di un pacemaker. Forse questo gli ha salvato la vita quando aveva solo 44 anni. Ci ha dato la possibilit\u00e0 di amarlo per altri 18 anni.<\/p>\n

IN CHE MODO LA LGMD L'HA INFLUENZATA NEL DIVENTARE LA PERSONA CHE \u00c8 OGGI:<\/strong>
\nMi ha fatto imparare a contare su me stessa, anzich\u00e9 cercare di risolvere i miei problemi rivolgendomi ad altri. Ho imparato molto presto che se si \u00e8 affetti da una malattia molto rara, si deve diventare difensori di se stessi. Inoltre, il fatto di avere una malattia muscolare mi ha fatto dedicare molto all'impegno accademico. Ho studiato genetica come studente universitario e scrittura creativa alla scuola di specializzazione. Senza i miei successi nell'istruzione superiore, potrei avere difficolt\u00e0 a scoprire il mio scopo nella vita.<\/p>\n

COSA VUOLE CHE IL MONDO SAPPIA DELLA LGMD:<\/strong>
\nPer quanto riguarda ci\u00f2 che vorrei che la gente sapesse della sindrome di Emery-Dreifuss (EDMD), probabilmente vorrei che la gente sapesse che sono uguale a qualsiasi altra persona dentro. Provo gli stessi dolori, ho gli stessi sogni e, soprattutto, desidero essere inclusa in tutto ci\u00f2 che c'\u00e8 da sperimentare nella vita. Sono felicemente sposata da quasi 12 anni, ho cresciuto un figlio fino all'et\u00e0 di 11 anni e soprattutto vorrei che le persone capissero che questi obiettivi di vita possono essere raggiunti da una persona anche se non \u00e8 in grado di camminare.<\/p>\n

SE LA VOSTRA LGM POTESSE ESSERE \"CURATA\" DOMANI, QUALE SAREBBE LA PRIMA COSA CHE VORRESTE FARE:<\/strong>
\nVorrei sostenere l'inclusione dell'EDMD nei test genetici offerti ai neonati. Il mio desiderio pi\u00f9 grande \u00e8 che non voglio che una generazione futura viva le difficolt\u00e0 che ho vissuto io, e il momento migliore per intervenire \u00e8 la nascita.<\/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>\n

<\/div>","protected":false},"excerpt":{"rendered":"

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