{"id":57,"date":"2023-11-06T10:46:14","date_gmt":"2023-11-06T10:46:14","guid":{"rendered":"https:\/\/liveunlimitedpku-dev-001.azurewebsites.net\/hu-hu\/?page_id=57"},"modified":"2025-01-28T15:09:40","modified_gmt":"2025-01-28T15:09:40","slug":"video-tortenetek","status":"publish","type":"page","link":"https:\/\/pku.biomarin.com\/hu-hu\/liveunlimited\/video-tortenetek\/","title":{"rendered":"Video t\u00f6rt\u00e9netek"},"content":{"rendered":"
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\n\t\t\t \t\t\t\t Az \u00e9let bonyolult, ha nincsenek meg a sz\u00fcks\u00e9ges eszk\u00f6z\u00f6k<\/span>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t

VIDEO T\u00d6RT\u00c9NETEK\n<\/h1>\n\t\t\t\t\t\t\t\t\t\t\t\t

Az \u00c9lj teljes \u00e9letet kamp\u00e1ny keret\u00e9ben sokfele j\u00e1rtunk Eur\u00f3p\u00e1ban, hogy PKU<\/a> val \u00e9l\u0151 feln\u0151ttekkel tal\u00e1lkozzunk, \u00e9s meghallgassuk t\u00f6rt\u00e9neteiket, kih\u00edv\u00e1saikat \u00e9s azt, milyen int\u00e9zked\u00e9sek megval\u00f3s\u00edt\u00e1s\u00e1t\u00f3l rem\u00e9ln\u00e9k az ell\u00e1t\u00e1s javul\u00e1s\u00e1t.<\/p>\n

Ezekre az esetekre a hat betegcsoport, illetve azok tagjainak t\u00f6rt\u00e9netein kereszt\u00fcl der\u00fclt f\u00e9ny: AMMeC \u00e9s Cometa A.S.M.M.E (P\u00e1dua) (Olaszorsz\u00e1g), Les Feux Follets (Franciaorsz\u00e1g), Svenska PKU-f\u00f6reningen (Sv\u00e9dorsz\u00e1g), PKU Aile Derne\u011fi (Turkey\u00e9s FEEMH (Spanyolorsz\u00e1g).<\/p>\n\t\t\t\t\t\t\t\t\n

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\u201cT\u00f6r\u00f6korsz\u00e1gban mintegy 10000 PKU-val \u00e9l\u0151 szem\u00e9ly van, de csak 50 anyagcsere szakorvos jut r\u00e1juk. Nagy probl\u00e9ma ez: nincs el\u00e9g orvos, sem anyagcsereprobl\u00e9m\u00e1kra szakosodott gy\u00f3gy\u00e1szati k\u00f6zpont.\u201d
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Lal t\u00f6rt\u00e9nete<\/a><\/p>\n <\/div>\n<\/div>\n\n

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„\u00dagy \u00e9reztem, hogy min\u00e9l id\u0151sebb vagyok, ann\u00e1l kevesebb figyelmet kapok. Egyre nehezebben l\u00e1tja az ember, mi k\u00f6vetkezik. Ki lesz az orvosom? Kivel tal\u00e1lkozom? Ki tud a v\u00e9rvizsg\u00e1latomr\u00f3l? Azt hiszem, ez mind nagyon zavaros. 18 \u00e9s 20 \u00e9ves korom k\u00f6z\u00f6tt \u2013 ilyen id\u0151s vagyok most \u2013 m\u00e9g mindig gyerekbetegk\u00e9nt kezelnek, holott technikai \u00e9rtelemben feln\u0151tt vagyok\u201d.
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Eva t\u00f6rt\u00e9nete<\/a><\/p>\n <\/div>\n<\/div>\n\n

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„A PKU komoly betegs\u00e9g, mert ha sz\u00fclet\u00e9skor nem diagnosztiz\u00e1lj\u00e1k, igaz\u00e1n dr\u00e1mai k\u00f6vetkem\u00e9nyekkel j\u00e1rhat. Testi vagy szellemi fogyat\u00e9koss\u00e1ghoz vezethet.”
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Antoine t\u00f6rt\u00e9nete<\/a><\/p>\n <\/div>\n<\/div>\n\n

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\u201cA PKU nem gyerekbetegs\u00e9g. Az\u00e9rt kezelik \u00fagy, mert a feln\u0151tteket egy\u00e1ltal\u00e1n nem veszik sz\u00e1m\u00edt\u00e1sba. \u00c9vente egyszer elv\u00e9gzik a v\u00e9rvizsg\u00e1latot, \u00e9s az \u00e9v h\u00e1tralev\u0151 r\u00e9sz\u00e9ben tudnak az \u00e1llapotukr\u00f3l.\u201d
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Nicol\u00f2 t\u00f6rt\u00e9nete<\/a><\/p>\n <\/div>\n<\/div>\n\n

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„Azt hiszem, az \u00e9n korombeli PKU betegek egyik aggodalma a j\u00f6v\u0151. \u00c9n az els\u0151 gener\u00e1ci\u00f3hoz tartozom, akiket \u00fajsz\u00fcl\u00f6ttk\u00e9nt diagnosztiz\u00e1ltak, \u00edgy jelenleg 50 \u00e9ves betegr\u0151l m\u00e9g nincsenek ismereteink. Megriaszt, hogy nem tudom, mire sz\u00e1m\u00edthatok. A PKU egy komoly \u00e1llapot, \u00e9s ha nem kezelik az elej\u00e9t\u0151l kezdve, annak meglehetnek a k\u00f6vetkezm\u00e9nyei.”
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Raquel t\u00f6rt\u00e9nete<\/a><\/p>\n <\/div>\n<\/div>\n\n

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\u201cElmentem a h\u00e1ziorvosomhoz, aki gyerekkorom \u00f3ta ismer, aki nem akart semmilyen di\u00e9t\u00e1s \u00e9telt fel\u00edrni. Voltam a lak\u00f3helyem k\u00f6rny\u00e9k\u00e9nek \u00f6sszes klinik\u00e1j\u00e1n, de minden orvos elk\u00fcld\u00f6tt. K\u00e9ts\u00e9gbeestem. Nagyon rosszul \u00e9reztem magam, ez\u00e9rt el akartam kezdeni ism\u00e9t a PKU-mmal foglalkozni. Seg\u00edts\u00e9get k\u00e9rtem, erre azt mondt\u00e1k, hogy \u00e1testem az ell\u00e1t\u00f3rendszer \u201esz\u0171r\u0151-lyukain\u201d, mivel m\u00e1r nem vagyok gyerek, \u00e9s nem folytattam k\u00f6vetkezetesen a kezel\u00e9st, visszat\u00e9rni pedig neh\u00e9z dolog. Nagyon nagy csal\u00f3d\u00e1s volt mindezzel szembes\u00fclni.\u201d
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Michelle t\u00f6rt\u00e9nete<\/a><\/p>\n <\/div>\n<\/div>\n\n

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„Ha egy sz\u00f3val kellene meghat\u00e1rozni ezt a betegs\u00e9get, akkor nekem az \u00f6nfegyelem sz\u00f3 jut az eszembe, mert az embernek folyamatosan kontroll\u00e1lnia kell \u00f6nmag\u00e1t, \u00e9lethosszig.\u201d
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Piroska t\u00f6rt\u00e9nete<\/a><\/p>\n <\/div>\n<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":2,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"class_list":["post-57","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"\nVideo t\u00f6rt\u00e9netek | Live Unlimited PKU<\/title>\n<meta name=\"description\" content=\"A Live Unlimited PKU kamp\u00e1ny r\u00e9szek\u00e9nt beutaztuk Eur\u00f3p\u00e1t, hogy tal\u00e1lkozzunk a PKU-val \u00e9l\u0151 feln\u0151ttekkel, \u00e9s hallhassunk \u00e9lm\u00e9nyeikr\u0151l.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/pku.biomarin.com\/hu-hu\/liveunlimited\/video-tortenetek\/\" \/>\n<meta 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