{"id":540,"date":"2023-11-08T22:54:57","date_gmt":"2023-11-08T22:54:57","guid":{"rendered":"https:\/\/liveunlimitedpku-dev-001.azurewebsites.net\/hu-hu\/?page_id=540"},"modified":"2025-01-28T15:07:00","modified_gmt":"2025-01-28T15:07:00","slug":"lal","status":"publish","type":"page","link":"https:\/\/pku.biomarin.com\/hu-hu\/liveunlimited\/lal\/","title":{"rendered":"Lal"},"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

LAL\n\n<\/h1>\n\t\t\t\t\t\t\t\t\t\t\t\t

T\u00f6r\u00f6korsz\u00e1g<\/p>\n

PKU-val Isztambulban felnevelkedni \u00e1ltal\u00e1noss\u00e1gban \u201eszerencs\u00e9s\u201d mondja Lal. B\u00e1r v\u00e1ltoz\u00f3 \u00e9s vibr\u00e1l\u00f3, mint egy \u2019hatalmas vil\u00e1g egy kisv\u00e1rosban\u2019 a PKU betegek sz\u00e1m\u00e1ra nagyon sok lehet\u0151s\u00e9g k\u00edn\u00e1lkozik m\u00e1s betegekkel kapcsolatba ker\u00fclni, \u00e9s orvosi seg\u00edts\u00e9get kapni.<\/p>\n\t\t\t\t\t\t\t\t\n

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Vissza az \u00f6sszes video t\u00f6rt\u00e9nethez<\/a><\/p>\n <\/div>\n

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Azonban sok beteg T\u00f6r\u00f6korsz\u00e1g szerte nem ilyen szerencs\u00e9s.<\/h2>\n

\u201eT\u00f6r\u00f6korsz\u00e1g lakoss\u00e1g\u00e1nak t\u00f6bbs\u00e9ge az orsz\u00e1g keleti r\u00e9sz\u00e9ben \u00e9l\u201d mondja Lal. [Az itt \u00e9l\u0151 PKU betegek sz\u00e1m\u00e1ra] nem \u00e1ll rendelkez\u00e9sre kell\u0151 mennyis\u00e9g\u0171 p\u00e9nz\u00fcgyi t\u00e1mogat\u00e1s, \u00e9s az eg\u00e9szs\u00e9g\u00fcgyi szolg\u00e1ltat\u00e1s sem elegend\u0151.\u201d<\/strong><\/p>\n

Hab\u00e1r a t\u00e1mogat\u00e1s megvan, mikor a PKU-s csecsem\u0151k megsz\u00fcletnek, sok beteg kiesik az ell\u00e1t\u00e1sb\u00f3l \u00e9lete k\u00e9s\u0151bbi szakasz\u00e1ban, \u00e9s orvosaik \u00e1ltal\u00e1ban nem k\u00f6vetik sorsukat \u2013 magyar\u00e1zza Lal.<\/p>\n

\u201cT\u00f6r\u00f6korsz\u00e1gban mintegy 10000 PKU-val \u00e9l\u0151 szem\u00e9ly van, de csak 50 anyagcsere szakorvos jut r\u00e1juk\u201d mondja Lal. \u201eNagy probl\u00e9ma ez: nincs el\u00e9g orvos, sem anyagcsereprobl\u00e9m\u00e1kra szakosodott gy\u00f3gy\u00e1szati k\u00f6zpont.\u201d<\/strong><\/p>\n

Lal szigor\u00fa \u00e9trenddel tartja k\u00e9zben a PKU-j\u00e1t, amiben \u00e9desanyja, Deniz seg\u00edtett neki eddigi \u00e9lete sor\u00e1n.<\/p>\n

\u201cAz els\u0151 eml\u00e9kem a PKU-val kapcsolatban 4 vagy 5 \u00e9ves koromra ny\u00falik vissza, mikor sz\u00fcleimmel szabads\u00e1gon voltunk. Vacsor\u00e1ztunk, \u00e9s valaki rizst rendelt nekem. Valahogy megtudtuk, hogy a rizsben h\u00fas m\u00e1rt\u00e1s volt, de akkor m\u00e1r k\u00e9s\u0151 volt. eml\u00e9kszem, hogy any\u00e1m igazi p\u00e1nikba esett. Riadtan sikoltozott.\u201d<\/strong><\/p>\n

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„A betegsz\u00f6vets\u00e9g\u00fcnk ny\u00e1ri t\u00e1borokat szervezett m\u00e1s betegekkel, de \u00e9n nem akartam elmenni, mert r\u00e1m rossz hat\u00e1ssal voltak.”<\/h3>\n

\u201cA betegek negat\u00edv m\u00f3don viselkedtek, ut\u00e1lt\u00e1k az \u00e9trendj\u00fcket, m\u00e9g magukat is ut\u00e1lt\u00e1k. Odaj\u00f6ttek hozz\u00e1m, \u00e9s megk\u00e9rdezt\u00e9k \u201eVan egy csokim, megk\u00f3stolod?\u201d Nem tartj\u00e1k be az \u00e9trendj\u00fcket, \u00e9s m\u00e9g csak nem is \u00e9rdekli \u0151ket.\u201d<\/em><\/p>\n

\u201cMeg\u00e9rtem persze, hogy olyan dolgokat szeretn\u00e9nek enni, amit tilos; azt viszont m\u00e1r nem \u00e9rtem, hogy felejtkezhetnek el a feh\u00e9rjefogyaszt\u00e1s ment\u00e1lis hat\u00e1sair\u00f3l; tal\u00e1n csak az\u00e9rt akarnak m\u00e1st is enni, hogy a bar\u00e1taik elfogadj\u00e1k \u0151ket, vagy csak egyszer elmenni egy koncertre, \u00e9s ber\u00fagni.\u201d<\/em><\/p>\n <\/div>\n \n

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B\u00e1r Lal sok t\u00e1mogat\u00e1st kap a bar\u00e1tait\u00f3l, csal\u00e1dtagjait\u00f3l, orvosait\u00f3l \u00e9s a PKU betegek h\u00e1l\u00f3zat\u00e1t\u00f3l, el\u0151fordul, hogy m\u00e9gis leter\u00edti \u0151t a betegs\u00e9g, f\u0151leg, ha a PHE szintje magas.<\/p>\n

\u201cMindig voltak figyelem probl\u00e9m\u00e1im; f\u00e1radtnak \u00e9reztem magam, \u00e9s nem volt er\u0151m semmihez. Voltak pillanatok, mikor sz\u00f6rny\u0171 haragos voltam. Mikor a PHE szint magas, fesz\u00fcltt\u00e9 v\u00e1lsz, \u00e9s igaz\u00e1n d\u00fch\u00f6s leszel. Ett\u0151l pedig megv\u00e1ltoznak az \u00e9rz\u00e9seid \u00e9s a koncentr\u00e1ci\u00f3d.\u201d<\/strong><\/p>\n

Lal azonban tudja, hogy a PKU \u00e1tfog\u00f3an er\u0151sebb\u00e9 tette. \u201cAz er\u0151t, amit ma \u00e9rzek a PKU-t\u00f3l kaptam, mert sz\u00fclet\u00e9semkor megtanultam, hogyan k\u00fczdjek le egy kih\u00edv\u00e1st. Megtanultam, hogyan szeressem magam, hogyan fogadjam el magam, \u00e9s hogyan viseljem gondj\u00e1t magamnak.\u201d<\/strong><\/p>\n

Ez sehol sem igazabb, mint a t\u00e1ncst\u00fadi\u00f3ban, ahova Lal j\u00e1r. Mikor a sz\u00ednh\u00e1zr\u00f3l \u00e9s a t\u00e1ncr\u00f3l besz\u00e9l, arca felragyog.<\/p>\n <\/div>\n <\/div>\n <\/div>\n<\/div>\n\n

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\u201cA sz\u00ednh\u00e1z \u00e9s a sz\u00ednpad mindig az \u00e9letem r\u00e9sze lesz, mert t\u00e9nyleg \u00e9rt\u00e9kes pillanat, mikor egy r\u00e9szemet \u00e1tadom a k\u00f6z\u00f6ns\u00e9gnek. A t\u00e1nc sz\u00e1momra valami m\u00e1s \u2013 seg\u00edt a hat\u00e1raimat feszegetnem.<\/h3>\n

< Lal t\u00f6rt\u00e9nete<\/strong><\/p>\n <\/div>\n \t\t<\/div>\n\t<\/div>\n<\/div>\n\n

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Vissza az \u00f6sszes video t\u00f6rt\u00e9nethez<\/a><\/p>\n <\/div>\n

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Eva t\u00f6rt\u00e9nete<\/a><\/p>\n <\/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-540","page","type-page","status-publish","hentry"],"acf":[],"yoast_head":"\nLal - BioMarin Live Unlimited HU-HU<\/title>\n<meta name=\"description\" content=\"Az \u00c9ld az \u00e9leted kamp\u00e1ny r\u00e9szek\u00e9nt Eur\u00f3pa sz\u00e1mos pontj\u00e1ra utaztunk, hogy tal\u00e1lkozzunk a PKU-val \u00e9l\u0151 feln\u0151ttekkel, \u00e9s hallgassuk meg t\u00f6rt\u00e9neteiket, kih\u00edv\u00e1saikat \u00e9s azt, hogy milyen int\u00e9zked\u00e9seket rem\u00e9ln\u00e9nek az ell\u00e1t\u00e1s jav\u00edt\u00e1sa \u00e9rdek\u00e9ben. 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