{"id":1440,"date":"2017-03-25T10:00:37","date_gmt":"2017-03-25T15:00:37","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1440"},"modified":"2017-03-25T10:00:37","modified_gmt":"2017-03-25T15:00:37","slug":"cecilia","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2017\/03\/25\/cecilia\/","title":{"rendered":"OSOBA Z LGMD: Cecilia"},"content":{"rendered":"

Wywiad LGMD Spotlight<\/strong><\/p>\n

Imi\u0119 i nazwisko:<\/strong> Cecilia \u00a0\u00a0WIEK:<\/strong> 36 lat\"\"<\/a><\/p>\n

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

Podtyp LGMD:\u00a0 <\/strong>LGMD2A\/kalpainopatia<\/p>\n

 <\/p>\n

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

Zdiagnozowano mnie, gdy mia\u0142em 12 lat.<\/p>\n

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

Zacz\u0105\u0142em chodzi\u0107 na palcach. Ponadto, od kiedy by\u0142em ma\u0142y, moja mama zauwa\u017cy\u0142a, \u017ce mia\u0142em op\u00f3\u017anione reakcje, na przyk\u0142ad w pogoni za pi\u0142k\u0105.<\/p>\n

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

Nie, jestem jedyn\u0105 osob\u0105 w mojej rodzinie cierpi\u0105c\u0105 na LGMD.<\/p>\n

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

Najwi\u0119kszym wyzwaniem by\u0142o przyzwyczajenie si\u0119 do pierwszych zmian, pierwszych rzeczy, kt\u00f3rych nie mog\u0142em robi\u0107: na przyk\u0142ad wchodzenia po schodach i wstawania z pod\u0142ogi. Na bardziej zaawansowanym etapie, wymy\u015blanie strategii wstawania z \u0142\u00f3\u017cka, krzes\u0142a itp., a nast\u0119pnie op\u0142akiwanie utraty zdolno\u015bci chodzenia i rozpocz\u0119cie korzystania z w\u00f3zka inwalidzkiego lub skutera w niepe\u0142nym lub pe\u0142nym wymiarze godzin.<\/p>\n

Wyzwaniem by\u0142o r\u00f3wnie\u017c znalezienie r\u00f3wnowagi i poznanie ogranicze\u0144 mojego cia\u0142a. Wiedza o tym, jak daleko mog\u0119 si\u0119 posun\u0105\u0107 bez wyczerpania; decydowanie, co zrobi\u0107 samemu, a kiedy poprosi\u0107 o pomoc.<\/p>\n

Dobr\u0105 rzecz\u0105 jest to, \u017ce nauczy\u0142em si\u0119 akceptowa\u0107 zmiany, by\u0107 sprytnym i kreatywnym oraz my\u015ble\u0107 o rozwi\u0105zaniach, aby robi\u0107 rzeczy w inny spos\u00f3b i szuka\u0107 alternatyw.<\/p>\n

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

Moim najwi\u0119kszym osi\u0105gni\u0119ciem jest to, \u017ce zawsze osi\u0105ga\u0142em to, co chcia\u0142em i nadal to robi\u0119. Du\u017ca w tym zas\u0142uga mojej rodziny, kt\u00f3ra zawsze uczy\u0142a mnie, \u017ce choroba nie jest przeszkod\u0105 ani wym\u00f3wk\u0105, \u017ce wszystko jest mo\u017cliwe, je\u015bli mo\u017cna \"znale\u017a\u0107 spos\u00f3b\", \u017ce istnieje alternatywna \u015bcie\u017cka, kt\u00f3ra mo\u017ce mie\u0107 przeszkody, ale kt\u00f3ra doprowadzi nas do celu.<\/p>\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

Gdybym nie cierpia\u0142 na t\u0119 chorob\u0119, nie by\u0142bym tym, kim jestem. Wyzwania sprawi\u0142y, \u017ce uros\u0142em i sta\u0142em si\u0119 silny. Nie zaprzeczam temu, czego nie mog\u0119 zrobi\u0107 i okoliczno\u015bciom, kt\u00f3re maj\u0105 na mnie wp\u0142yw. Rozwin\u0105\u0142em umiej\u0119tno\u015b\u0107 konfrontowania si\u0119 z pozytywnym nastawieniem do zachodz\u0105cych zmian. Wiem, \u017ce w jaki\u015b spos\u00f3b rzeczy zawsze si\u0119 uk\u0142adaj\u0105.<\/p>\n

Wp\u0142yn\u0119\u0142o to na moj\u0105 karier\u0119 zawodow\u0105 i dziedzin\u0119, w kt\u00f3rej zdecydowa\u0142em si\u0119 pracowa\u0107. Pracuj\u0119 w organizacjach pozarz\u0105dowych na rzecz praw os\u00f3b niepe\u0142nosprawnych, zw\u0142aszcza w zakresie dost\u0119pno\u015bci fizycznej. R\u00f3wnie\u017c tutaj, w Argentynie, jestem cz\u0119\u015bci\u0105 Stowarzyszenia Dystrofii Mi\u0119\u015bniowej i pisz\u0119 artyku\u0142y zach\u0119caj\u0105ce innych, kt\u00f3rzy do\u015bwiadczaj\u0105 sytuacji powoduj\u0105cych niepe\u0142nosprawno\u015b\u0107.<\/p>\n

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

    \n
  1. \u017be ta choroba, podobnie jak wiele innych, nie czyni ludzi gorszymi od innych.<\/li>\n
  2. Obalanie mit\u00f3w, takich jak ten, \u017ce jeste\u015bmy s\u0142abi i delikatni.<\/li>\n
  3. Wyj\u015b\u0107 poza uprzedzenia.<\/li>\n
  4. Aby istnia\u0142y r\u00f3wne prawa: aby\u015bmy mogli studiowa\u0107, pracowa\u0107, zakochiwa\u0107 si\u0119 i osi\u0105ga\u0107 tak wiele rzeczy.<\/li>\n<\/ol>\n

    Jestem osob\u0105 zdeterminowan\u0105, by \u017cy\u0107 pe\u0142ni\u0105 \u017cycia. Czy nie tego wszyscy szukaj\u0105?<\/p>\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

    Mog\u0119 sobie wyobrazi\u0107 tak wiele rzeczy! Nic szczeg\u00f3lnego, ale po prostu ponowne po\u0142\u0105czenie si\u0119 z moim cia\u0142em: bieganie, skakanie, wchodzenie po schodach, jazda na rowerze, zabawa z moim siostrze\u0144cem na pod\u0142odze, chodzenie do wszystkich miejsc, do kt\u00f3rych nie mog\u0142em si\u0119 dosta\u0107.<\/p>\n

    I oczywi\u015bcie mia\u0142bym wi\u0119cej si\u0142y, by pomaga\u0107 tym, kt\u00f3rzy wci\u0105\u017c czekaj\u0105 na lekarstwo! Jestem tego cz\u0119\u015bci\u0105.<\/p>\n

     <\/p>\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: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

    LGMD Spotlight Interview Name: Cecilia \u00a0\u00a0AGE: 36 years Country: Argentina […]<\/p>","protected":false},"author":1,"featured_media":1439,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[72],"class_list":["post-1440","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-argentina"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Cecilia - 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\/2017\/03\/25\/cecilia\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Cecilia - 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