{"id":2781,"date":"2019-09-12T11:55:24","date_gmt":"2019-09-12T16:55:24","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2781"},"modified":"2019-09-12T11:55:24","modified_gmt":"2019-09-12T16:55:24","slug":"individual-with-lgmd-tasha-2","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/uncategorized\/2019\/09\/12\/individual-with-lgmd-tasha-2\/","title":{"rendered":"Persona con LGMD: Tasha"},"content":{"rendered":"

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

\"\"<\/figure>\n\n\n\n

Nome<\/strong>: Tasha              Et\u00e0<\/strong>: 46<\/p>\n\n\n\n

Paese<\/strong>: Stati Uniti<\/p>\n\n\n\n

Sottotipo LGMD<\/strong>: LGMD2L\n<\/p>\n\n\n\n

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

Mi \u00e8 stato diagnosticato all'et\u00e0 di 13 anni, ma avevo problemi dall'et\u00e0 di 8 anni circa.\ncirca 8 anni. Mi hanno detto che si trattava di\ndolori della crescita e poi mi hanno dato diverse diagnosi sbagliate. All'et\u00e0 di 13 anni, i miei livelli ematici sono stati esaminati\ne sono risultati fuori scala.<\/p>\n\n\n\n

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

Ho avvertito debolezza e un terribile dolore a entrambi i polpacci\nmuscoli del polpaccio dopo l'esercizio fisico.<\/p>\n\n\n\n

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

S\u00ec, mio fratello minore ha la stessa diagnosi di LGMD2L. Ha avuto una progressione e un livello di atrofia muscolare\ne il livello di atrofia muscolare. Mia sorella maggiore\nsorella maggiore non ce l'ha. Entrambi i miei\ngenitori erano portatori.<\/p>\n\n\n\n

Quali sono, secondo lei, le maggiori sfide\nnel vivere con la LGMD<\/strong>:<\/p>\n\n\n\n

Le mie sfide pi\u00f9 grandi con questa malattia sono la stanchezza e il dolore.\ndolore. E le persone che non capiscono.<\/p>\n\n\n\n

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

Continuare a lavorare ed esercitarsi ogni giorno.<\/p>\n\n\n\n

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

Dipende! Mi ha fatto diventare un difensore di me stesso e della salute. Mi \u00e8 stato detto che in et\u00e0 adulta sarei stata su una sedia a rotelle, se non prima. Mi \u00e8 stato anche detto di pianificare la mia carriera di conseguenza. Poi mi \u00e8 stato detto di interrompere tutti i miei sport e le mie attivit\u00e0. Per me, tredicenne, questo ha avuto effetti profondi sulla mia infanzia, perch\u00e9 ero molto coinvolta negli sport ed ero molto brava, soprattutto nel calcio. Per non impazzire, ho ignorato il consiglio del medico e l'ho fatto comunque. Ho giocato a calcio per tutta l'universit\u00e0 e anche dopo. Credo che mi abbia aiutato in generale con il mio atteggiamento e il mio benessere fisico. Spesso mi facevo male e avevo difficolt\u00e0 a camminare, ma credo che nel complesso mi abbia aiutato a mantenermi in salute e a tenere attivi i muscoli. Faccio ancora esercizio fisico e attivit\u00e0 all'aperto, ma i tempi di recupero sono pi\u00f9 lunghi. Sono un contabile e credo che questo sia in parte dovuto alle mie capacit\u00e0. Credo che la LGMD mi abbia reso complessivamente una persona pi\u00f9 forte. <\/p>\n\n\n\n

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

Innanzitutto, anche se la consapevolezza \u00e8 stata portata alla ribalta, soprattutto per quanto riguarda la Duchenne MD, \u00e8 stato soprattutto grazie ai Telethon di Jerry Lewis che si tengono ogni anno. Ci sono molte altre forme di distrofia muscolare che le persone come me hanno.... che hanno bisogno di ricerca. Le persone soffrono e non c'\u00e8 una cura! Inoltre, con la LGMD, ho notato che non sempre \u00e8 evidente che le persone hanno una disabilit\u00e0. Significa che.... sembro del tutto normale ma ho diversi problemi che la gente non riconosce. Poich\u00e9 non sono su una sedia a rotelle, alcune persone pensano che io stia solo fingendo. Non riesco pi\u00f9 a fare le scale e ho dovuto rifiutare molte opportunit\u00e0 di lavoro perch\u00e9 non c'era l'ascensore.<\/p>\n\n\n\n

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

Lo direi al mondo.....<\/p>\n\n\n\n

* * * * Per leggere altre \"interviste LGMD Spotlight\" o\nper proporsi come volontario in una delle prossime interviste, visitate il nostro sito web\na: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a>  <\/p>\n\n\n\n

* * * Per favore, metti un like, un commento e condividi questo post per contribuire a sensibilizzare l'opinione pubblica sulla LGMD.\nsulla LGMD!
\n
\n<\/p>","protected":false},"excerpt":{"rendered":"

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