{"id":1315,"date":"2016-09-02T08:01:44","date_gmt":"2016-09-02T13:01:44","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1315"},"modified":"2016-09-02T08:01:44","modified_gmt":"2016-09-02T13:01:44","slug":"melanie-2","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2016\/09\/02\/melanie-2\/","title":{"rendered":"INDIVIDUO CON LGMD: Melanie"},"content":{"rendered":"

Intervista a LGMD Spotlight -\u00a0<\/strong>09\/02\/2016<\/strong><\/p>\n

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

Nome<\/strong>: Melania\u00a0 Et\u00e0<\/strong>: 29 anni\"LGMD2i<\/a><\/p>\n

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

Sottotipo LGMD<\/strong> : LGMD2i (tipo eterozigote)<\/p>\n

 <\/p>\n

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

Mi \u00e8 stata diagnosticata all'et\u00e0 di 4 anni con una biopsia muscolare.<\/p>\n

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

Cadevo sempre quando cercavo di correre e di fare le scale. Questo mi procurava molti lividi e cicatrici! Inoltre, non riuscivo ad alzarmi da terra da sola. Questi sintomi si sono manifestati gi\u00e0 all'et\u00e0 di 2 anni.<\/p>\n

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

No, sono l'unica in famiglia con la LGMD.<\/p>\n

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

La sfida pi\u00f9 grande \u00e8 far capire alle persone che non sono troppo pigro per svolgere le attivit\u00e0 quotidiane, ma che sono troppo debole per farle da solo. Un'altra sfida per molti di noi \u00e8 accettare la sedia a rotelle come migliore amica!<\/p>\n

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

Ci sono troppe conquiste! Vivere bene con la LGMD \u00e8 gi\u00e0 di per s\u00e9 un traguardo! Sul mio blog (www.littlemissturtle.com<\/a>) Scrivo di tutte le mie conquiste e avventure su ruote.<\/p>\n

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

Sono cresciuta con la LGMD. Mi ha reso una persona molto forte. Affrontare una malattia progressiva che causa debolezza e atrofia muscolare, pur essendo pienamente consapevole, \u00e8 una sfida impegnativa che apprezzo ogni giorno della mia vita! Recentemente ho smesso di lavorare per avere pi\u00f9 tempo per fare tutte le cose che amo. La LGMD mi ha insegnato a prendere le cose con calma. Godere di pi\u00f9, preoccuparsi di meno, essere positivi e passare pi\u00f9 tempo possibile con i propri cari. Questa \u00e8 la mia strada!<\/p>\n

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

La LGMD \u00e8 una malattia rara e complessa. Non pu\u00f2 essere paragonata a nessun'altra malattia come la sclerosi multipla (SM), ecc. \u00c8 importante ascoltare pienamente la persona affetta da LGMD quando chiede assistenza, per evitare di ferirla nel processo.<\/p>\n

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

Mi alzavo dal letto da sola, mi vestivo e poi andavo a fare la passeggiata della mia vita! Camminerei per tutto il tempo che i miei piedi mi porterebbero.<\/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>","protected":false},"excerpt":{"rendered":"

LGMD Spotlight interview –\u00a009\/02\/2016 \u00a0 Name:\u00a0 Melanie\u00a0 Age:\u00a0 29 yrs. 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