{"id":2098,"date":"2018-07-13T09:14:39","date_gmt":"2018-07-13T14:14:39","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2098"},"modified":"2018-07-13T09:14:39","modified_gmt":"2018-07-13T14:14:39","slug":"individual-with-lgmd-majed","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2018\/07\/13\/individual-with-lgmd-majed\/","title":{"rendered":"INDIVIDUO CON LGMD: Majed"},"content":{"rendered":"<p><strong>LGMD \"INTERVISTA SPOTLIGHT\"<\/strong><\/p>\n<p><strong>Nome<\/strong>: Majed\u00a0 \u00a0<strong>Et\u00e0<\/strong>:\u00a0 20\u00a0\u00a0<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/07\/LGMD2C-Majed-1.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-2099 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/07\/LGMD2C-Majed-1-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Paese<\/strong>:  Siria \/ Germania<\/p>\n<p><strong>LGMD Sottotipo<\/strong>:  LGMD2C<\/p>\n<p>&nbsp;<\/p>\n<p><strong>A CHE ET\u00c0 \u00c8 STATA FATTA LA DIAGNOSI<\/strong>:<\/p>\n<p>Mi \u00e8 stato diagnosticato all'et\u00e0 di 8 anni.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>QUALI SONO STATI I PRIMI SINTOMI<\/strong>:<\/p>\n<p>I sintomi hanno iniziato a manifestarsi quando avevo 7 anni.  Da piccola camminavo sulle punte dei piedi.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>\u00a0HA ALTRI FAMILIARI AFFETTI DA LGMD?<\/strong>:<\/p>\n<p>S\u00ec, anche a mio fratello e a due miei zii (fratelli di mia madre) \u00e8 stata diagnosticata la LGMD2C. (Mio fratello vive ancora in Siria e si chiama Younis. \u00c8 stato precedentemente presentato in un'intervista di LGMD Spotlight).<\/p>\n<p>&nbsp;<\/p>\n<p><strong>QUALI SONO, SECONDO LEI, LE MAGGIORI SFIDE NEL VIVERE CON LA LGMD<\/strong>:<\/p>\n<p>La sfida pi\u00f9 grande per me \u00e8 camminare e stare in piedi per lunghi periodi. Posso camminare per 500 metri usando un bastone.   Uso anche una sedia a rotelle e in bagno ho qualche difficolt\u00e0.  A volte svolgo alcune attivit\u00e0 quotidiane da solo.<\/p>\n<p>Ora vivo in Germania con mio zio e non vedo i miei genitori e i miei fratelli da due anni.  Penso che sia difficile vivere da sola... lontano dalla mia famiglia, dai miei fratelli e dal mio Paese.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>QUAL \u00c8 IL SUO PI\u00d9 GRANDE RISULTATO<\/strong>:<\/p>\n<p>La verit\u00e0 \u00e8 che non so quale sia il risultato pi\u00f9 grande per me.   Ma sono orgogliosa di poter ancora camminare e fare un po' di esercizio fisico.<\/p>\n<p>Nonostante le condizioni di guerra e di sfollamento in Siria, sono riuscita a superare con successo la scuola superiore e 10 anni fa ho imparato a nuotare.<\/p>\n<p>Ma la sfida pi\u00f9 grande che ho affrontato \u00e8 il viaggio di rifugio dalla Siria alla Germania attraverso 9 Paesi.  In 10 giorni non posso descrivere le difficolt\u00e0 incontrate su strada. In una foresta in Serbia, ho percorso 5 chilometri e all'epoca non avevo una sedia a rotelle, a parte l'affondamento della nostra barca davanti alle isole greche, non so come sono sopravvissuto all'annegamento.<\/p>\n<p>Ora imparo la lingua tedesca e, una volta terminato, completer\u00f2 i miei studi universitari.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>IN CHE MODO LA LGMD L'HA INFLUENZATA NEL DIVENTARE LA PERSONA CHE \u00c8 OGGI<\/strong>:<\/p>\n<p>La LGMD mi ha insegnato a essere un essere umano paziente e gentile.  Una persona pu\u00f2 fare ci\u00f2 che vuole, indipendentemente dalle circostanze.  \u00c8 dura, ma mi ha anche insegnato a mostrare volont\u00e0 e determinazione.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>COSA VOLETE CHE IL MONDO SAPPIA DELLA LGMD?<\/strong>:<\/p>\n<p>Voglio che il mondo conosca meglio questa malattia e tutti i diversi tipi di LGMD. Inoltre, voglio che le persone sappiano che una maggiore ricerca sulla LGMD \u00e8 fondamentale per aiutare a trovare una cura e un trattamento per queste malattie. Spero che gli scienziati trovino una cura per questa malattia. Voglio anche che le persone prendano provvedimenti per prevenirla.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>SE LA VOSTRA LGM POTESSE ESSERE \"CURATA\" DOMANI, QUALE SAREBBE LA PRIMA COSA CHE VORRESTE FARE?<\/strong>:<\/p>\n<p>La prima cosa che faccio \u00e8 andare in piscina e saltare da un posto alto.  E poi correre velocemente e giocare a calcio con mio fratello Younis.<\/p>\n<p>&nbsp;<\/p>\n<p>* * * Per leggere altre \"interviste LGMD Spotlight\" o per proporsi come volontari per una prossima intervista, visitate il nostro sito web all'indirizzo <a href=\"https:\/\/www.lgmd-info.org\/it\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><u>\u00a0 <\/u><\/p>\n<p>* * * Vi invitiamo a mettere MI PIACE, COMMENTARE e CONDIVIDERE questo post per contribuire a sensibilizzare l'opinione pubblica sulla LGMD!<\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name: Majed\u00a0 \u00a0Age:\u00a0 20\u00a0\u00a0 Country: \u00a0Syria \/ [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2099,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,75],"tags":[98],"class_list":["post-2098","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2c","tag-lgmd2c-syria-germany"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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