{"id":1282,"date":"2016-07-26T15:59:21","date_gmt":"2016-07-26T20:59:21","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1282"},"modified":"2016-07-26T15:59:21","modified_gmt":"2016-07-26T20:59:21","slug":"maram","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2016\/07\/26\/maram\/","title":{"rendered":"INDIVIDUO CON LGMD: Maram"},"content":{"rendered":"

07\/26\/2016 –\u00a0<\/strong>Intervista a riflettori accesi sulla LGMD<\/p>\n

NOME<\/strong>: Maram\u00a0\u00a0\u00a0 ET\u00c0<\/strong>: 26 anni\"LGMD2E<\/a><\/p>\n

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

Sottotipo LGMD<\/strong>: LGMD2E<\/p>\n

 <\/p>\n

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

Mi \u00e8 stata diagnosticata la distrofia muscolare all'et\u00e0 di 10 anni. A 26 anni ho ricevuto la conferma genetica della diagnosi di LGMD2E.<\/p>\n

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

Quando avevo 3 anni, i miei genitori notarono che la mia andatura era instabile e che mi era difficile alzarmi da terra.<\/p>\n

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

No, sono l'unico della mia famiglia.<\/p>\n

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

Le sfide sono tante. Le cose semplici per molte persone sono le mie sfide pi\u00f9 grandi, ma andare in bagno e cambiare posizione da un lato all'altro mentre dormo mi fa sentire cos\u00ec debole.<\/p>\n

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

Nel mio Paese la gente non sa nulla della LGMD. Sto cercando ogni giorno di aumentare la consapevolezza della malattia attraverso i social media. Ho aiutato molti pazienti nel mio Paese e nel mondo arabo a sottoporsi al test genetico per confermare la diagnosi e a ottenere le attrezzature di cui abbiamo bisogno per renderci la vita un po' pi\u00f9 facile. Ho anche contattato i miei pazienti di tutto il mondo e siamo diventati amici intimi. Sono loro i miei pi\u00f9 grandi successi.<\/p>\n

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

Credo che mi abbia reso pi\u00f9 forte in un modo o nell'altro. Sono diventata pi\u00f9 attenta alle persone che mi circondano. Apprezzo ogni piccola benedizione nella mia vita, compresa la mia grande famiglia. Sono diventata pi\u00f9 vicina a Dio. Penso che mi abbia cambiato in modo positivo e mi piace la persona che sono oggi.<\/p>\n

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

Voglio che sappiano che non siamo cos\u00ec diversi dalle persone normali. \u00c8 successo che un semplice errore genetico o una mutazione ha causato la mia difficolt\u00e0 a muovermi mentre loro possono farlo. La causa non \u00e8 cos\u00ec complicata e se la capiamo, possiamo trovare il trattamento.<\/p>\n

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

Vorrei abbracciare i miei genitori cos\u00ec forte e non lasciarli mai andare. Continuo a pensare a quanto sarebbe difficile la vita senza di loro.<\/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":"

07\/26\/2016 –\u00a0LGMD “Spotlight Interview” NAME:\u00a0 Maram\u00a0\u00a0\u00a0 AGE: 26 years old […]<\/p>","protected":false},"author":1,"featured_media":1281,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,62],"tags":[63],"class_list":["post-1282","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2e","tag-lgmd2e-palestine"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Maram - 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\/2016\/07\/26\/maram\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Maram - 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