{"id":3769,"date":"2020-12-03T09:38:38","date_gmt":"2020-12-03T15:38:38","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3769"},"modified":"2024-02-09T14:24:25","modified_gmt":"2024-02-09T14:24:25","slug":"individual-with-lgmd-saira","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2020\/12\/03\/individual-with-lgmd-saira\/","title":{"rendered":"INDIVIDUO CON LGMD - Saira"},"content":{"rendered":"

\"\"<\/a><\/strong><\/p>\n

Nome<\/strong>: Saira<\/p>\n

Et\u00e0<\/strong>: 29<\/p>\n

Paese<\/strong>: Indiano che vive negli EAU<\/p>\n

Sottotipo LGMD<\/strong> (se noto): LGMD 2B\/R2 correlata alla disferlina<\/p>\n

\u00a0<\/strong><\/p>\n

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

Mi \u00e8 stata diagnosticata all'et\u00e0 di 16 anni. Ho avuto la conferma genetica nel febbraio 2020.<\/p>\n

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

I primi sintomi sono stati le cadute improvvise e l'alzarsi da seduti a terra.<\/p>\n

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

No, nessuno dei miei familiari ha la LGMD. Sono l'unico a cui \u00e8 stata diagnosticata la LGMD.<\/p>\n

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

Barriere ambientali e accessibilit\u00e0 alla sedia a rotelle. Opportunit\u00e0 di lavoro senza lo stigma legato alle mie capacit\u00e0. Mancanza di neurologi interessati alla LGMD e di risposte rapide alla diagnosi. Progressione della LGMD e come affrontare le continue sfide associate alla malattia. Scarse o nulle indicazioni sui tipi di attrezzature che potrebbero essere utili per le attivit\u00e0 quotidiane.<\/p>\n

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

Ho iniziato un nuovo lavoro con un'azienda negli Emirati Arabi Uniti che mi ha permesso di lavorare da casa come sistemazione accessibile per includermi. Ora lavoro ogni giorno per Inclusive per creare un impatto globale e rendere questo mondo pi\u00f9 accessibile online e offline.<\/p>\n

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

Mi ha dato una nuova prospettiva di vita e mi ha fatto apprezzare il mio tempo e le mie capacit\u00e0 attuali.<\/p>\n

Potrei non essere in grado di fare tutto fisicamente come un'altra persona, ma questo non significa che non abbia nulla da contribuire a creare un impatto nel mondo che condividiamo tutti allo stesso modo.<\/p>\n

La LGMD mi ha insegnato a essere grata alla mia famiglia pi\u00f9 di prima, grazie al loro costante sostegno.<\/p>\n

Mi ha fatto vivere e amare ogni momento sempre di pi\u00f9.<\/p>\n

Poich\u00e9 si tratta di una malattia degenerativa, che progredisce, le cose che posso fare oggi potrebbero non essere pi\u00f9 quelle che potrei fare l'anno prossimo. Quindi, cerco di godermi ogni movimento fisico che posso fare oggi, in questo momento. A partire dal pettinarmi fino al prepararmi una tazza di t\u00e8, lo apprezzo.<\/p>\n

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

Voglio che il mondo sappia che questa \u00e8 una malattia rara. Potrebbe capitare a chiunque. Potreste essere voi che state leggendo questo articolo o qualcuno che non conoscete che potrebbe convivere con questa malattia. Ma c'\u00e8 gente che convive con questa malattia che consuma i muscoli e che \u00e8 in attesa di una cura. Posso farvi l'esempio della pandemia e di come gli scienziati di tutto il mondo stiano correndo per trovare un vaccino. Nel caso della LGMD, invece, la ricerca si protrae da decenni senza risultati, per mancanza di fondi o di sostegno da parte del governo. Dal momento dei sintomi alla diagnosi, fino al giorno in cui ho accettato la LGMD e ho iniziato a conviverci, \u00e8 stato un viaggio solitario. Il sostegno di mio marito, della mia famiglia e dei miei amici \u00e8 qualcosa che mi d\u00e0 coraggio ogni giorno. La mancanza di specialisti e di conoscenze adeguate \u00e8 qualcosa che affronto a ogni visita medica. Abbiamo bisogno di empatia in un ambiente senza barriere. Ieri camminavo e oggi ho bisogno di una sedia a rotelle. La giustificazione della mia condizione sarebbe pi\u00f9 facile se la gente conoscesse la LGMD.<\/p>\n

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

La domanda a cui rispondo \u00e8 ipotetica. Avrei voluto rispondere come se fosse una domanda concreta, e aspetto il giorno con positivit\u00e0 e speranza.<\/p>\n

Il giorno \u00e8 forse lontano, o potrebbe essere presto. Mi piacerebbe inginocchiarmi e pregare come vorrei, come si fa nel mio credo religioso. Vorrei ballare e pattinare, cosa che non posso pi\u00f9 fare dato che convivo con la LGMD. Vorrei guidare un'auto. Desidero tornare a essere indipendente.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"featured_media":3836,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[],"class_list":["post-3769","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD - Saira - 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\/2020\/12\/03\/individual-with-lgmd-saira\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta 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