{"id":1047,"date":"2015-11-06T10:43:55","date_gmt":"2015-11-06T16:43:55","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1047"},"modified":"2015-11-06T10:43:55","modified_gmt":"2015-11-06T16:43:55","slug":"siri","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/it\/individuals-with-lgmd-interviews\/2015\/11\/06\/siri\/","title":{"rendered":"INDIVIDUO CON LGMD: Siri"},"content":{"rendered":"

11\/06\/2015<\/strong><\/p>\n

NOME<\/strong>: Siri\u00a0 ET\u00c0<\/strong>: 28 anni<\/p>\n

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

Sottotipo LGMD<\/strong>: LGMD2A \/ Calpainopatia\"LGMD2A<\/a><\/p>\n

 <\/p>\n

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

Mi \u00e8 stata diagnosticata all'et\u00e0 di 26 anni.<\/p>\n

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

Ho iniziato a sperimentare una stanchezza inspiegabile all'et\u00e0 di 16 anni. All'et\u00e0 di 19 anni ho notato che avevo difficolt\u00e0 a mettere<\/p>\n

braccio destro sopra la testa. All'inizio dei miei 20 anni le corde dei talloni hanno iniziato a darmi fastidio, essendo molto strette. Qualche anno<\/p>\n

In seguito ho iniziato a fare fatica con le scale e i sedili bassi e non riuscivo pi\u00f9 a correre o a saltare.<\/p>\n

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

No, sono l'unico membro della famiglia con LGMD2A.<\/p>\n

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

Le attivit\u00e0 quotidiane che la gente d\u00e0 per scontate mi rendono davvero frustrato a volte. Come uscire da un<\/p>\n

sedia, girarmi nel letto o allacciarmi le scarpe: tutte queste piccole cose mi fanno stancare e non mi piace sprecare<\/p>\n

energia su di esso. Ma la vera lotta \u00e8 tutto il lavoro extra che comporta avere una disabilit\u00e0. La gente non vede tutti i<\/p>\n

Le ore che passo a sbrigare le pratiche burocratiche per ottenere le cose di cui ho bisogno e per capire i miei diritti, la fisioterapia, le visite mediche e cos\u00ec via, o tutto il tempo che \"spreco\" a riposare perch\u00e9 un giorno ho esagerato. \u00c8 anche una sfida essere dipendenti da altre persone.<\/p>\n

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

Ho completato 6 anni di universit\u00e0 e mi sono laureata come insegnante. Ho anche visitato diversi<\/p>\n

paesi ed escursioni in varie montagne nonostante le mie difficolt\u00e0.<\/p>\n

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

Mi ha insegnato a non dare nulla per scontato. Mi ha reso pi\u00f9 umile e grata per tutte le piccole cose della vita. Mi ha insegnato a rallentare, a essere pi\u00f9 paziente e a osare chiedere aiuto per i piccoli compiti. E a godermi ogni giorno! Mi ha anche reso pi\u00f9 creativa, perch\u00e9 devo trovare nuovi modi per fare le cose. E ho fatto tante nuove amicizie! Mi piace molto.<\/p>\n

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

Il fatto che esista davvero \u00e8 un buon inizio! E che colpisce le persone in modi diversi, ma che per la maggior parte di noi \u00e8<\/p>\n

\u00e8 molto frustrante\/depressivo perdere le abilit\u00e0 nel tempo. Abbiamo sempre a che fare con questo problema, dal momento che si tratta di una<\/p>\n

malattia progressiva. \u00c8 un dolore continuo. E che colpisce anche i nostri cari. Siate gentili, sempre.<\/p>\n

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

Correrei! E salterei dappertutto. E ballerei tutta la notte! E aiuterei i miei amici a muoversi, o qualcosa del genere, haha \ud83d\ude09<\/p>\n

 <\/p>\n

Per leggere altre \"interviste LGMD Spotlight\" o per proporsi come volontario per una prossima intervista, visitate il nostro sito web: https:\/\/www.lgmd-info.org\/spotlight-interviews.<\/p>\n

 <\/p>","protected":false},"excerpt":{"rendered":"

11\/06\/2015 NAME:\u00a0 Siri\u00a0 AGE: \u00a028 yrs. old COUNTRY: \u00a0Norway LGMD […]<\/p>","protected":false},"author":1,"featured_media":1048,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,45],"class_list":["post-1047","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-norway"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Siri<\/title>\n<meta name=\"description\" content=\"Siri, diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares her experience in living with this progressive neuro-muscular disease.\" \/>\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\/2015\/11\/06\/siri\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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