{"id":6,"date":"2023-10-31T15:24:45","date_gmt":"2023-10-31T15:24:45","guid":{"rendered":"https:\/\/liveunlimitedpku-dev-001.azurewebsites.net\/hu-hu\/?page_id=6"},"modified":"2024-12-07T21:20:49","modified_gmt":"2024-12-07T21:20:49","slug":"honlap","status":"publish","type":"page","link":"https:\/\/pku.biomarin.com\/hu-hu\/liveunlimited\/","title":{"rendered":"Honlap"},"content":{"rendered":"
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A SZ\u00dcKS\u00c9GES ESZK\u00d6Z\u00d6K H\u00cdJ\u00c1N AZ \u00c9LET BONYOLULT.\n<\/h1>\n\t\t\t\t\t\t\t\t\t\t\t\t\n

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A fenilketonuri\u00e1ban (PKU) feln\u0151tteknek csup\u00e1n 12%-a jut hozz\u00e1 a sz\u00e1mukra sz\u00fcks\u00e9ges multidiszciplin\u00e1ris(t\u00f6bb tudom\u00e1nyter\u00fcletet fel\u00f6lel\u0151) eszk\u00f6z\u00f6kh\u00f6z \u00e9s t\u00e1mogat\u00e1shoz3<\/sup>. Kamp\u00e1nyunk c\u00e9lja, hogy ezen v\u00e1ltoztassunk.<\/h2>\n <\/div>\n <\/div>\n <\/div>\n<\/div>\n\n
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A fenilketonuria (PKU) egy ritka, eg\u00e9sz \u00e9leten \u00e1t tart\u00f3 anyagcsere rendelleness\u00e9g, amelynek k\u00f6vetkezt\u00e9ben a beteg csak korl\u00e1tozottan k\u00e9pes a feh\u00e9rj\u00e9t lebontani, \u00e9s amely kumulat\u00edv toxikus hat\u00e1sokat id\u00e9zhet el\u0151 az agyban1<\/sup>.<\/h3>\n

Eur\u00f3p\u00e1ban 10.000-b\u0151l kb. 1 csecsem\u0151 sz\u00fcletik ezzel a genetikai rendelleness\u00e9ggel. A sz\u0171r\u00e9s az \u00fajsz\u00fcl\u00f6tt sark\u00e1nak megsz\u00far\u00e1s\u00e1val t\u00f6rt\u00e9nik.<\/p>\n

A PKU azonban nem csup\u00e1n egy gyermekbetegs\u00e9g. A probl\u00e9m\u00e1val \u00e9rintett feln\u0151ttek kezel\u00e9sre szorulnak, \u00e9s olyan \u00e9trendet kell k\u00f6vetni\u00fck, amely szinte egy\u00e1ltal\u00e1n nem tartalmaz feh\u00e9rj\u00e9t, hogy ez\u00e1ltal minim\u00e1lisra cs\u00f6kkents\u00e9k a t\u00fcneteket, \u00e9s megel\u0151zz\u00e9k az agyk\u00e1rosod\u00e1st1,2<\/sup>. A PKU-r\u00f3l itt<\/a>. tudhat meg t\u00f6bbet.<\/p>\n <\/div>\n \n

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A sz\u00fcks\u00e9ges eszk\u00f6z\u00f6k n\u00e9lk\u00fcl\u00f6z\u00e9se napi val\u00f3s\u00e1g a PKU-val \u00e9l\u0151k sz\u00e1m\u00e1ra Eur\u00f3pa-szerte.<\/h2>\n <\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n
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A PKU-val \u00e9l\u0151 feln\u0151ttek \u00e1pol\u00e1sa igen vegyes k\u00e9pet mutat Eur\u00f3p\u00e1ban mind diagn\u00f3zis, mind a kezel\u00e9s, mind pedig a betegs\u00e9g \u00e9leten \u00e1t tart\u00f3 kontroll\u00e1l\u00e1sa szempontj\u00e1b\u00f3l3<\/sup>.<\/h3>\n

A rendelleness\u00e9g neurol\u00f3giai hat\u00e1sai \u00e9s az alacsony feh\u00e9rje tartalm\u00fa \u00e9trend neh\u00e9zs\u00e9gei dac\u00e1ra a PKU-val \u00e9l\u0151 feln\u0151tteknek\u00a0<\/strong>csak\u00a012%-a<\/strong>\u00a0f\u00e9r hozz\u00e1 a sz\u00fcks\u00e9ges multidiszciplin\u00e1ris eszk\u00f6z\u00f6kh\u00f6z \u00e9s t\u00e1mogat\u00e1shoz3<\/sup>. Egyes feln\u0151ttek k\u00f3rh\u00e1zak gyermekoszt\u00e1lyaira k\u00e9nyszer\u00fclnek befek\u00fcdni szakorvosi ell\u00e1t\u00e1s rem\u00e9ny\u00e9ben.<\/p>\n <\/div>\n \t\t<\/div>\n\t<\/div>\n<\/div>\n\n

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A PKU kontroll\u00e1l\u00e1sa a feln\u0151ttkor teljes id\u0151szak\u00e1ban gyakran igen neh\u00e9z, amelyet tov\u00e1bb s\u00falyosb\u00edt a megfelel\u0151 t\u00e1mogat\u00e1s hi\u00e1nya4<\/sup>.\n \n \n<\/h2>\n\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t
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arr\u00f3l sz\u00e1mol be, hogy szigor\u00fa \u00e9trend betart\u00e1sa \u2019jelent\u0151s er\u0151fesz\u00edt\u00e9st\u2019 ig\u00e9nyelt\n<\/h4>\n \n <\/div>\n<\/div>\n\n
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szerint nehezebb\u00e9 v\u00e1ltak bar\u00e1ti, csal\u00e1di \u00e9s a partnerkapcsolatai\n<\/h4>\n \n <\/div>\n<\/div>\n\n
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kirekesztetts\u00e9get tapasztal a k\u00f6z\u00f6ss\u00e9g r\u00e9sz\u00e9r\u0151l\n<\/h4>\n \n <\/div>\n<\/div>\n\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n<\/div>\n\n
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Ha \u00d6n PKU-val \u00e9l, itt<\/a> tal\u00e1l tov\u00e1bbi beteg t\u00e1mogat\u00e1st.<\/h4>\n <\/div>\n <\/div>\n <\/div>\n<\/div>\n\n
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Ennek meg kell v\u00e1ltoznia.<\/h2>\n

Az \u00c9lj teljes \u00e9letet (Live Unlimited) kamp\u00e1ny c\u00e9lja a nyilv\u00e1noss\u00e1g figyelm\u00e9nek felh\u00edv\u00e1sa a PKU-ra, erre az eg\u00e9sz \u00e9leten \u00e1t tart\u00f3 probl\u00e9m\u00e1ra, illetve a rendelleness\u00e9ggel \u00e9l\u0151k t\u00e1mogat\u00e1sa abban, hogy a d\u00f6nt\u00e9shoz\u00f3k k\u00f6zbenj\u00e1r\u00e1s\u00e1t k\u00e9rj\u00e9k szakorvosi ell\u00e1t\u00e1shoz val\u00f3 jobb hozz\u00e1jut\u00e1s \u00e9s gyakori feln\u0151ttgondoz\u00e1s biztos\u00edt\u00e1s\u00e1hoz.<\/p>\n

Betegcsoportokkal kar\u00f6ltve Eur\u00f3pa-szerte a megfelel\u0151 sz\u00e1m\u00fa metabolizmus specialista, dietetikus \u00e9s pszichol\u00f3giai seg\u00edts\u00e9g biztos\u00edt\u00e1s\u00e1t s\u00fcrgetj\u00fck minden PKU-val \u00e9l\u0151 eur\u00f3pai polg\u00e1r sz\u00e1m\u00e1ra, amint az a PKU 2017. \u00e9vi Eur\u00f3pai Ir\u00e1nyelveiben is olvashat\u00f31<\/sup>.<\/p>\n <\/div>\n \n

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Referenci\u00e1k:\n<\/h4>\n\t\t\t\t\t\t
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  1. Wegberg AMJ, MacDonald A, Ahring K \u00e9s m\u00e1sok. The complete European guidelines on phenylketonuria: diagnosis and treatment. (A fenilketonuria diagn\u00f3zis\u00e1val \u00e9s kezel\u00e9s\u00e9vel kapcsolatos \u00f6sszes Eur\u00f3pai Ir\u00e1nyelv) Orphanet J Rare Dis. 2017;12(1):162. 2017 okt\u00f3ber.\n<\/span><\/li>\n
  2. Bilder DA \u00e9s m\u00e1sok. Systematic Review and Meta-Analysis of Neuropsychiatric Symptoms and Executive Functioning in Adults With Phenylketonuria. (Neuropszichi\u00e1triai t\u00fcnetek k\u00f6vetkezetes \u00e1ttekint\u00e9se \u00e9s meta-elemz\u00e9se \u00e9s a v\u00e9grehajt\u00f3 funkci\u00f3 m\u0171k\u00f6d\u00e9se fenilketonuri\u00e1val \u00e9l\u0151 feln\u0151ttekn\u00e9l) Dev Neuropsychol.2016. m\u00e1jus-j\u00fanius;41(4):245-260.\n<\/span><\/li>\n
  3. Blau \u00e9s m\u00e1sok. A fenilketonuria kontroll\u00e1l\u00e1sa Eur\u00f3p\u00e1ban: felm\u00e9r\u00e9si adatok 19 orsz\u00e1gb\u00f3l. Molekul\u00e1ris genetika \u00e9s metabolizmus\n<\/span><\/li>\n
  4. Ford, S. \u00e9s m\u00e1sok. Fenilketonuri\u00e1val \u00e9lni: a PKU k\u00f6z\u00f6ss\u00e9gt\u0151l kapott lecke. Molekul\u00e1ris genetika \u00e9s metabolizmus jelent\u00e9s. 2018\n<\/span><\/li>\n
  5. A BioMarin megb\u00edzta az Alligator k\u00f6zv\u00e9lem\u00e9nykutat\u00f3 c\u00e9get egy hat k\u00e9rd\u00e9sb\u0151l \u00e1ll\u00f3 online felm\u00e9r\u00e9s elk\u00e9sz\u00edt\u00e9s\u00e9vel az Egyes\u00fclt Kir\u00e1lys\u00e1g, Franciaorsz\u00e1g, N\u00e9metorsz\u00e1g, Olaszorsz\u00e1g, Spanyolorsz\u00e1g, Sv\u00e9dorsz\u00e1g, Hollandia \u00e9s T\u00f6r\u00f6korsz\u00e1g orsz\u00e1gosan reprezentat\u00edv mint\u00e1i alapj\u00e1n \u00f6sszesen 4151 v\u00e1laszad\u00f3 r\u00e9szv\u00e9tel\u00e9vel.*\nA felm\u00e9r\u00e9sre 2019. j\u00fanius 1. \u00e9s 6. k\u00f6z\u00f6tt ker\u00fclt sor. A v\u00e1laszad\u00f3kat arra k\u00e9rt\u00fck, hogy \u00e9rt\u00e9kelj\u00e9k \u00e9let\u00fck hat m\u00e9rf\u00f6ldk\u00f6v\u00e9t 5 fokozat\u00fa sk\u00e1l\u00e1n (\u201eegy\u00e1ltal\u00e1n nem\u201d jelent stresszt \u2013 \u201erendk\u00edv\u00fcli\u201d stresszt jelent). Valamilyen eg\u00e9szs\u00e9g\u00fcgyi probl\u00e9m\u00e1val rendelkez\u0151 v\u00e1laszad\u00f3k \u00f6sszesen: 1932. \u00d6sszesen 112 PKU beteget kerest\u00fcnk meg k\u00fcl\u00f6n-k\u00fcl\u00f6n olaszorsz\u00e1gi, sv\u00e9dorsz\u00e1gi, spanyolorsz\u00e1gi, t\u00f6r\u00f6korsz\u00e1gi \u00e9s hollandiai betegcsoportokkal egy\u00fcttm\u0171k\u00f6dve.\n<\/span><\/li>\n <\/ol>\n\t\t\t\t\t<\/div>\n\t<\/div>\n<\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":1,"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-6","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"\nHonlap | Live Unlimited PKU<\/title>\n<meta name=\"description\" content=\"A Live Unlimited PKU kamp\u00e1ny elindul, hogy felh\u00edvja a figyelmet a PKU-ra \u00e9s azokra a kih\u00edv\u00e1sokra, amelyekkel a 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