{"id":3643,"date":"2020-09-15T17:53:22","date_gmt":"2020-09-15T22:53:22","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3643"},"modified":"2024-02-09T14:24:30","modified_gmt":"2024-02-09T14:24:30","slug":"kaya","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2020\/09\/15\/kaya\/","title":{"rendered":"OSOBA Z LGMD: Kaya"},"content":{"rendered":"
\"\"<\/figure><\/div>\n\n\n\n

LGMD \"WYWIAD W \u015aWIETLE REFLEKTOR\u00d3W\" <\/strong><\/p>\n\n\n\n

Nazwa<\/strong>: Kaya                           Wiek<\/strong>: 18 lat<\/p>\n\n\n\n

Kraj<\/strong>: Holandia<\/p>\n\n\n\n

Podtyp LGMD<\/strong>: LGMD 2D\/ R3 zwi\u0105zany z alfa-sarkoglikanem<\/p>\n\n\n\n

W jakim wieku zosta\u0142e\u015b zdiagnozowany?<\/strong>: <\/p>\n\n\n\n

S\u0105dz\u0119, \u017ce musia\u0142o to by\u0107 oko\u0142o moich trzecich urodzin, cho\u0107 nie mog\u0119 powiedzie\u0107, \u017ce wiele z tego pami\u0119tam. Diagnoza zosta\u0142a postawiona naprawd\u0119 wcze\u015bnie.<\/p>\n\n\n\n

Jakie by\u0142y pierwsze objawy?<\/strong>:<\/p>\n\n\n\n

Urodzi\u0142em si\u0119 prawie r\u00f3wnocze\u015bnie z moj\u0105 siostr\u0105 i m\u00f3j pierwszy objaw pojawi\u0142 si\u0119, gdy zacz\u0105\u0142em raczkowa\u0107, moja siostra, kt\u00f3ra jest zdrowa, raczkowa\u0142a jak normalne niemowl\u0119, podczas gdy ja raczkowa\u0142em w dziwny spos\u00f3b, z jedn\u0105 nog\u0105 przed drug\u0105, w zasadzie wlok\u0105c si\u0119. Akupunkturzysta i wielki przyjaciel rodziny zauwa\u017cy\u0142 to i ostrzeg\u0142 moj\u0105 matk\u0119, st\u0105d moja wczesna diagnoza. Kolejnym objawem, kt\u00f3ry rozwin\u0105\u0142 si\u0119 nieco p\u00f3\u017aniej, by\u0142y moje upadki. Objawi\u0142o si\u0119 to, gdy po raz pierwszy zacz\u0105\u0142em chodzi\u0107 do szko\u0142y i stara\u0142em si\u0119 nad\u0105\u017cy\u0107 za r\u00f3wie\u015bnikami. Po otrzymaniu terapii genowej w ramach badania klinicznego ten ostatni objaw bardzo si\u0119 zmniejszy\u0142 do tego stopnia, \u017ce nie upad\u0142em od oko\u0142o dw\u00f3ch lat, co, jak przypuszczam, jest wynikiem, kt\u00f3rego wi\u0119kszo\u015b\u0107 zdrowych ludzi nie jest w stanie powt\u00f3rzy\u0107.<\/p>\n\n\n\n

Czy masz innych cz\u0142onk\u00f3w rodziny cierpi\u0105cych na LGMD?<\/strong><\/p>\n\n\n\n

Nie, jestem jedyn\u0105 osob\u0105 w mojej rodzinie.<\/p>\n\n\n\n

Co uwa\u017casz za najwi\u0119ksze wyzwanie w \u017cyciu z LGMD?<\/strong>:<\/p>\n\n\n\n

Dla mnie \u017cycie z LGMD oznacza ci\u0105g\u0142\u0105 walk\u0119. \u0106wicz\u0119 codziennie. Tylko podstawowe rzeczy, takie jak dwa razy po pi\u0119\u0107 minut crosstrainingu, dwa razy po jednej minucie plankingu i tak dalej. Czasami trudno jest zachowa\u0107 pozytywne nastawienie i znale\u017a\u0107 motywacj\u0119 do tak ci\u0119\u017ckiej pracy, jak do tej pory. Ka\u017cdy ma inny spos\u00f3b walki z LGMD, m\u00f3j spos\u00f3b jest do\u015b\u0107 dos\u0142owny i bezpo\u015bredni i jak dot\u0105d dobrze mi s\u0142u\u017cy\u0142. Taka postawa ma jednak swoj\u0105 cen\u0119, poniewa\u017c nie jest ona podzielana przez ludzi w moim wieku, przez co mam trudno\u015bci ze znalezieniem jakiegokolwiek kontaktu z nimi i nara\u017cam si\u0119 na izolacj\u0119 spo\u0142eczn\u0105 jeszcze przed blokad\u0105 koronawirusa.<\/p>\n\n\n\n

Jakie jest twoje najwi\u0119ksze osi\u0105gni\u0119cie?<\/strong>:<\/p>\n\n\n\n

Wci\u0105\u017c tu jestem i staj\u0119 si\u0119 silniejszy ni\u017c kiedykolwiek. Jak wspomniano wcze\u015bniej, otrzyma\u0142em terapi\u0119 genow\u0105 w ramach badania klinicznego. Po tym leczeniu zabra\u0142em si\u0119 do pracy, aby moje cia\u0142o by\u0142o tam, gdzie chc\u0119. Ci\u0119\u017cko pracowa\u0142em przed badaniem, aby zminimalizowa\u0107 wszelkie uszkodzenia, co jest do\u015b\u0107 trudne dla m\u0142odego dziecka, kt\u00f3re zawsze musi by\u0107 odpowiedzialne i przyjmowa\u0107 wiele suplement\u00f3w, kt\u00f3re nie zawsze s\u0105 znane z tego, \u017ce s\u0105 smaczne, a nast\u0119pnie po otrzymaniu badania zacz\u0105\u0142em uprawia\u0107 sport i czu\u0142em, \u017ce jestem coraz silniejszy i og\u00f3lnie w lepszej kondycji. Stwierdzenie, \u017ce pokona\u0142em LGMD jest przedwczesne, a przez to g\u0142upie, ale by\u0142bym bardziej ni\u017c szcz\u0119\u015bliwy mog\u0105c powiedzie\u0107, \u017ce obecnie daj\u0119 mu salut jednym palcem.<\/p>\n\n\n\n

Jak LGMD wp\u0142yn\u0119\u0142o na to, \u017ce sta\u0142e\u015b si\u0119 osob\u0105, kt\u00f3r\u0105 jeste\u015b dzisiaj:<\/strong><\/p>\n\n\n\n


Jako m\u0142ody dzieciak LGMD zmusi\u0142o mnie do bycia bardzo odpowiedzialnym, poniewa\u017c przy ka\u017cdym niew\u0142a\u015bciwym ruchu mog\u0142em upa\u015b\u0107 i co\u015b sobie z\u0142ama\u0107. Zmusi\u0142a mnie r\u00f3wnie\u017c do dawania z siebie wszystkiego i robienia wszystkiego, co w mojej mocy, a tak\u017ce do walki z tym, czego nie da si\u0119 pokona\u0107. Sprawi\u0142o te\u017c, \u017ce doceniam \u017cycie i wszystkie dobre chwile, kt\u00f3rych do\u015bwiadczy\u0142em. Wp\u0142yn\u0119\u0142o to na moje warto\u015bci i priorytety. Wszystkie te wp\u0142ywy s\u0105 widoczne we wszystkim, co mnie definiuje, od muzyki, kt\u00f3rej s\u0142ucham i kt\u00f3r\u0105 tworz\u0119, przez moj\u0105 etyk\u0119 pracy w szkole, a\u017c po rodzaj ludzi, z kt\u00f3rymi lubi\u0119 przebywa\u0107.<\/p>\n\n\n\n

Co chcia\u0142by\u015b, aby \u015bwiat dowiedzia\u0142 si\u0119 o LGMD?<\/strong>:<\/p>\n\n\n\n

Chc\u0119, aby \u015bwiat wiedzia\u0142, \u017ce ludzie pracuj\u0105 niestrudzenie, aby nam pom\u00f3c. Widzia\u0142em ogromne laboratoria i obiekty, kt\u00f3re s\u0105 wykorzystywane do stworzenia ostatecznego lekarstwa i do\u015bwiadczy\u0142em z pierwszej r\u0119ki, \u017ce pracuj\u0105 nad dobrymi rzeczami. Chcia\u0142bym z\u0142agodzi\u0107 twoj\u0105 rozpacz i powiedzie\u0107, \u017ce ta dziedzina rozwija si\u0119 w niesamowitym tempie. Gwarantuj\u0119, \u017ce pewnego dnia kto\u015b do ciebie zadzwoni i powie: \"Cze\u015b\u0107, chyba mam co\u015b dla ciebie\".<\/p>\n\n\n\n

Gdyby jutro mo\u017cna by\u0142o \"wyleczy\u0107\" chorob\u0119 LGMD, co by\u0142oby pierwsz\u0105 rzecz\u0105, kt\u00f3r\u0105 chcia\u0142by\u015b zrobi\u0107?<\/strong>:<\/p>\n\n\n\n

My\u015bl\u0119, \u017ce wielkie gratulacje dla wszystkich by\u0142ych cz\u0142onk\u00f3w LGMD i niesamowitych badaczy by\u0142yby na miejscu.<\/p>\n\n\n\n

Aby przeczyta\u0107 wi\u0119cej wywiad\u00f3w \"LGMD Spotlight Interviews\" lub zg\u0142osi\u0107 si\u0119 do udzia\u0142u w nadchodz\u0105cym wywiadzie, odwied\u017a nasz\u0105 stron\u0119 internetow\u0105: http:\/\/lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSPOTLIGHT INTERVIEW\u201d  Name: Kaya                           Age:  18 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":3654,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,28],"tags":[],"class_list":["post-3643","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2d"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Kaya - LGMD Awareness Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2020\/09\/15\/kaya\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Kaya - 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