QUAL \u00c8, SECONDO LEI, LA SFIDA PI\u00d9 GRANDE NEL VIVERE CON LA LGMD<\/strong>:<\/p>\nFaccio fatica ad avere abbastanza energia per fare le cose che voglio e devo fare durante il giorno. Cerco di pianificare la mia giornata in anticipo, in modo da sapere cosa e come utilizzare le mie energie durante il giorno. Gli imprevisti o le faccende domestiche a volte sono un problema.<\/p>\n
Anche i lunghi inverni sono una sfida. In inverno rimango in casa il pi\u00f9 possibile. Esco solo quando \u00e8 necessario. Mio figlio lo capisce, ma non \u00e8 sempre bello per lui non poter giocare all'aperto o passare pi\u00f9 tempo all'aria aperta in inverno. Quando c'\u00e8 il gelo o la neve sto ancora pi\u00f9 al chiuso perch\u00e9 ho paura di cadere.<\/p>\n
A causa della LGMD a volte mi sembra di avere un carattere corto...?<\/p>\n
QUAL \u00c8 IL SUO PI\u00d9 GRANDE RISULTATO<\/strong>:<\/p>\nUno dei miei pi\u00f9 grandi successi \u00e8 che mi sono trasferito dall'Olanda alla Danimarca 15 anni fa. Ho una bella moglie e un figlio di 7 anni (quasi 8). Ho anche un lavoro che mi permette di lavorare 20 ore alla settimana. (La Danimarca cerca di aiutare i disabili dove pu\u00f2).<\/p>\n
IN CHE MODO LA LGMD L'HA INFLUENZATA NEL DIVENTARE LA PERSONA CHE \u00c8 OGGI:<\/strong><\/p>\nSono ancora in grado di camminare, e il mio medico mi ha detto che potr\u00f2 farlo per sempre J, ma a volte sono un po' instabile e cammino in modo \"strano\".<\/p>\n
Devo pianificare le mie giornate, pianificare la mia energia, se c'\u00e8 qualcosa di diverso come un appuntamento devo saperlo con giorni di anticipo. Altrimenti prendo le cose come vengono, un giorno alla volta.<\/p>\n
COSA VOLETE CHE IL MONDO SAPPIA DELLA LGMD?<\/strong>:<\/p>\nVoglio che il mondo sappia che la distrofia muscolare della cintura degli arti (LGMD) esiste e che \u00e8 una malattia rara. La forma di LGMD che ho io - LGMD di tipo 2A - \u00e8 piuttosto rara! In Danimarca si stima che solo il 6% dei pazienti affetti da LGMD abbia una diagnosi di LGMD2A.<\/p>\n
SE DOMANI LA VOSTRA LGMD POTESSE ESSERE \"CURATA\", QUALE SAREBBE LA PRIMA COSA CHE VORRESTE FARE?<\/strong>:<\/p>\nCorrere! Sono passati molti anni dall'ultima volta che ho potuto correre o che sono stata stabile nella camminata.<\/p>\n
<\/p>","protected":false},"excerpt":{"rendered":"
04\/14\/2015 NAME:\u00a0 Freddy \u00a0\u00a0AGE: 49 Yrs. Old COUNTRY:\u00a0 Denmark LGMD […]<\/p>","protected":false},"author":1,"featured_media":599,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[37,15],"class_list":["post-598","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-denmark","tag-lgmd2a"],"acf":[],"yoast_head":"\n
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<\/a><\/p>\n