A CHE ET\u00c0 \u00c8 STATA FATTA LA DIAGNOSI<\/strong>:<\/p>\nMi \u00e8 stata inizialmente diagnosticata una forma non specificata di distrofia muscolare all'et\u00e0 di 25 anni. Ho ricevuto la conferma della diagnosi di LGMD2A all'et\u00e0 di 43 anni.<\/p>\n
QUALI SONO STATI I PRIMI SINTOMI:<\/strong><\/p>\nAlla fine dell'adolescenza ho sviluppato una goffa deambulazione quando camminavo e all'inizio dei 20 anni ho iniziato a zoppicare.<\/p>\n
HA ALTRI FAMILIARI AFFETTI DA LGMD: <\/strong><\/p>\nS\u00ec, un fratello ha la LGMD2A ma l'altro no.<\/p>\n
QUAL \u00c8, SECONDO LEI, LA SFIDA PI\u00d9 GRANDE NEL VIVERE CON LA LGMD<\/strong>:<\/p>\nPer dirla tutta, la cosa peggiore \u00e8 avere a che fare con i bagni pubblici, perch\u00e9 il trasferimento da\/verso una sedia a rotelle \u00e8 fisicamente difficile e i bagni non sono sempre allestiti in modo adeguato, quindi sono sempre preoccupata di bere acqua o caff\u00e8 mentre sono fuori. A volte sembra che la mia vita giri intorno alla gestione dei liquidi!<\/p>\n
QUAL \u00c8 IL SUO PI\u00d9 GRANDE RISULTATO<\/strong>:<\/p>\nProfessionalmente, il mio pi\u00f9 grande risultato \u00e8 il coinvolgimento nella creazione e nella gestione della Coalition to Cure Calpain 3 (C3), un gruppo senza scopo di lucro che si occupa di finanziare la ricerca ad alto potenziale per curare la LGMD2A (nota anche come Calpainopatia) e di educare la comunit\u00e0 globale sulla malattia.<\/p>\n
Personalmente, il mio ultimo risultato \u00e8 stato risolvere un mini cruciverba del New York Times in 15 secondi,
\nIN CHE MODO LA LGMD L'HA INFLUENZATA NEL DIVENTARE LA PERSONA CHE \u00c8 OGGI:<\/strong><\/p>\nIl lato positivo \u00e8 che mi ha reso pi\u00f9 empatico e mi ha dato l'opportunit\u00e0 di mostrare ai miei figli che \u00e8 importante agire quando si \u00e8 frustrati dallo stato delle cose. Non lamentatevi, siate un agente di cambiamento.<\/p>\n
Il lato negativo \u00e8 che mi ha costretto ad adattare la mia vita quotidiana a causa del peggioramento della mia mobilit\u00e0 e, sebbene riesca a trarre il massimo dalla mia vita e sia generalmente felice e produttivo, questo presenta certamente delle sfide e pu\u00f2 diventare faticoso dal punto di vista fisico ed emotivo.<\/p>\n
COSA VOLETE CHE IL MONDO SAPPIA DELLA LGMD?<\/strong>:<\/p>\nAbbiamo bisogno di pi\u00f9 fondi per la ricerca e di pi\u00f9 scienziati impegnati a trovare un trattamento o una cura.<\/p>\n
SE DOMANI LA VOSTRA LGMD POTESSE ESSERE \"CURATA\", QUALE SAREBBE LA PRIMA COSA CHE VORRESTE FARE?<\/strong>:<\/p>\nAndare in bicicletta (preferibilmente una Schwinn rosa con un cestino sul manubrio e un thermos di caff\u00e8) alla spiaggia e camminare lungo il molo con la mia famiglia.<\/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>","protected":false},"excerpt":{"rendered":"
LGMD \u201cSPOTLIGHT INTERVIEW\u201d NAME:\u00a0 Michele \u00a0\u00a0AGE: 52 Yrs. Old […]<\/p>","protected":false},"author":1,"featured_media":1340,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[15,16],"class_list":["post-1341","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a","tag-united-states"],"acf":[],"yoast_head":"\n
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<\/a><\/p>\n