{"id":3276,"date":"2020-06-16T14:26:06","date_gmt":"2020-06-16T19:26:06","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3276"},"modified":"2024-02-09T14:24:37","modified_gmt":"2024-02-09T14:24:37","slug":"ibrahim","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2020\/06\/16\/ibrahim\/","title":{"rendered":"INDIVIDUO CON LGMD: \u0130brahim"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

LGMD \"INTERVISTA SPOTLIGHT\" <\/strong><\/p>\n\n\n\n

Nome<\/strong>: \u0130brahim                                 Et\u00e0<\/strong>: 55 anni<\/p>\n\n\n\n

Paese<\/strong>: Turchia  <\/p>\n\n\n\n

Sottotipo LGMD<\/strong>: LGMD 2B\/R2 legato alla disferlina<\/p>\n\n\n\n

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

Mi \u00e8 stata diagnosticata all'et\u00e0 di 25 anni.<\/p>\n\n\n\n

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

All'inizio mi sentivo stanca nei movimenti ripetitivi. La debolezza sembrava iniziare dalle caviglie. Era pi\u00f9 presente nel piede sinistro.<\/strong><\/p>\n\n\n\n

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

No, nella mia famiglia non c'\u00e8 nessuno che abbia la stessa diagnosi.<\/p>\n\n\n\n

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

All'inizio c'era un leggero affaticamento. Poich\u00e9 ero un'insegnante, i lunghi periodi in piedi sembravano influire negativamente sulle mie prestazioni lavorative. Ho iniziato a camminare con un bastone singolo, ma avevo difficolt\u00e0 ad andare al lavoro. Ho iniziato a usare le sedie.<\/p>\n\n\n\n

Trattandosi di una malattia muscolare di tipo lento e progressivo, avevo difficolt\u00e0 a spiegarmi con chi mi stava intorno.<\/strong><\/p>\n\n\n\n

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

Dopo aver lasciato la professione di insegnante, ho pensato di toccare la vita degli altri. In primo luogo, ho lavorato per T\u00fcrkiye Kas Hastal\u0131klar\u0131 Derne\u011fi (Organizzazione turca per i disturbi muscolari - come MDA). In seguito ho lavorato anche per HASGAP (Rete di volontari per i pazienti). Lavoro ancora per l'Izmir-Turkey Muscle Diseases Branch a titolo volontario. Ho la passione per la poesia e la scrittura fin dagli anni della scuola secondaria. Ho scritto due libri di poesia (Moon Blue Nights e a Shore-Free Sea).<\/p>\n\n\n\n

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

Vivere con la LGMD mi ha permesso di portare la morte in tasca, consentendomi di assaporare di pi\u00f9 la vita. L'ha resa pi\u00f9 produttiva. Ha portato la vita a toccare di pi\u00f9.<\/p>\n\n\n\n

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

L'unico modo in cui il mondo conosce il nostro mondo \u00e8 fare la differenza. Non possiamo parlare di cambiare la qualit\u00e0 della nostra vita se non sogniamo, produciamo e condividiamo ci\u00f2 che produciamo. La maggior parte di noi lotta contro le proprie malattie. Se non c'\u00e8 sogno e sforzo in questo sforzo, non possiamo cambiare nulla. Le mentalit\u00e0 che non sognano e non producono non possono capire questo.<\/p>\n\n\n\n

Voglio che sappiano che il nostro cuore e il nostro cervello stanno lavorando.<\/p>\n\n\n\n

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

Modificherei la mia immaginazione. Correrei tra le galassie e giocherei nei parchi per bambini delle galassie. Per leggere altre \"interviste LGMD Spotlight\" o per proporsi come volontario per una prossima intervista, visitate il nostro sito web all'indirizzo: http:\/\/lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

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