{"id":3558,"date":"2020-09-04T10:02:29","date_gmt":"2020-09-04T15:02:29","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3558"},"modified":"2024-02-09T14:24:33","modified_gmt":"2024-02-09T14:24:33","slug":"tatyana","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2020\/09\/04\/tatyana\/","title":{"rendered":"OSOBA Z LGMD: Tatyana"},"content":{"rendered":"<p><strong>LGMD \"WYWIAD W \u015aWIETLE REFLEKTOR\u00d3W\"&nbsp;<\/strong><\/p>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter size-large\"><img decoding=\"async\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271024%27%20height%3D%27576%27%20viewBox%3D%270%200%201024%20576%27%3E%3Crect%20width%3D%271024%27%20height%3D%27576%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2020\/09\/LGMD2A-Tatyana-1024x576.png\" alt=\"\" class=\"lazyload wp-image-3559\"\/><\/figure><\/div>\n\n\n\n<p><strong>Nazwa<\/strong>:  Tatyana&nbsp;&nbsp;      <strong>Wiek<\/strong>: 33 lata<\/p>\n\n\n\n<p><strong>Kraj<\/strong>: Rosja<\/p>\n\n\n\n<p><strong>Podtyp LGMD<\/strong>:  LGMD 2A \/ R1 zwi\u0105zany z kalpain\u01053<\/p>\n\n\n\n<p><strong>W jakim wieku zosta\u0142e\u015b zdiagnozowany?<\/strong>:<\/p>\n\n\n\n<p>W wieku 14-15 lat zdiagnozowano u mnie nieznany podtyp LGMD. Kiedy mia\u0142em 27 lub 28 lat, moja diagnoza zosta\u0142a potwierdzona genetycznie.<\/p>\n\n\n\n<p><strong>Jakie by\u0142y pierwsze objawy?<\/strong>:<\/p>\n\n\n\n<p>Moimi pierwszymi objawami by\u0142y trudno\u015bci z bieganiem, wchodzeniem po schodach, a tak\u017ce nigdy nie mog\u0142em robi\u0107 podci\u0105gni\u0119\u0107.<\/p>\n\n\n\n<p><strong>Czy masz innych cz\u0142onk\u00f3w rodziny cierpi\u0105cych na LGMD?<\/strong><\/p>\n\n\n\n<p>Nie, jestem jedyn\u0105 osob\u0105 z LGMD w mojej rodzinie.<\/p>\n\n\n\n<p><strong>Co uwa\u017casz za najwi\u0119ksze wyzwanie w \u017cyciu z LGMD?<\/strong>:<\/p>\n\n\n\n<p>Akceptacja by\u0142a znacznie trudniejsza ni\u017c fizyczna niepe\u0142nosprawno\u015b\u0107. Jeste\u015b rzadki, jeste\u015b inny. Nie nale\u017cysz do \u017cadnej wsp\u00f3lnej grupy spo\u0142ecznej. Nie masz nikogo, kto m\u00f3g\u0142by podzieli\u0107 si\u0119 swoimi do\u015bwiadczeniami i ci pom\u00f3c. Dzi\u0119ki Internetowi pozna\u0142em ludzi z r\u00f3\u017cnymi rodzajami dystrofii mi\u0119\u015bniowej, kt\u00f3rzy wiedz\u0105, jak to jest. Teraz rozumiem, jak wa\u017cne jest bycie cz\u0119\u015bci\u0105 spo\u0142eczno\u015bci, w kt\u00f3rej mo\u017cna znale\u017a\u0107 wsparcie.<\/p>\n\n\n\n<p>Drugim wyzwaniem jest brak dost\u0119pno\u015bci. Zawsze musz\u0119 planowa\u0107 ka\u017cdy krok, ka\u017cd\u0105 tras\u0119.<\/p>\n\n\n\n<p><strong>Jakie jest twoje najwi\u0119ksze osi\u0105gni\u0119cie?<\/strong>:<\/p>\n\n\n\n<p>Nie wiem J Moje \u017cycie jest ca\u0142kiem zwyczajne: Pracuj\u0119, ucz\u0119 si\u0119 nowych rzeczy. Kocham moj\u0105 rodzin\u0119 i przyjaci\u00f3\u0142. My\u015bl\u0119, \u017ce moim najwi\u0119kszym osi\u0105gni\u0119ciem jest przezwyci\u0119\u017cenie strachu przed byciem zale\u017cnym z powodu post\u0119puj\u0105cej utraty si\u0142. Ju\u017c mnie to nie przera\u017ca. Teraz po prostu szukam sposob\u00f3w na u\u0142atwienie sobie \u017cycia z LGMD.<\/p>\n\n\n\n<p><strong>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<p>To zmieni\u0142o mnie do g\u0142\u0119bi. Mam wi\u0119cej empatii, jestem bardziej tolerancyjny. Doceniam rzeczy, kt\u00f3re zwykle s\u0105 brane za pewnik.<\/p>\n\n\n\n<p><strong>Co chcia\u0142by\u015b, aby \u015bwiat dowiedzia\u0142 si\u0119 o LGMD?<\/strong>:<\/p>\n\n\n\n<p>Chc\u0119, aby \u015bwiat wiedzia\u0142, \u017ce LGMD jest chorob\u0105 post\u0119puj\u0105c\u0105 i potrzeba czasu, aby si\u0119 do niej przyzwyczai\u0107. I chc\u0119, aby \u015bwiat wiedzia\u0142, \u017ce \u017cycie z LGMD mo\u017ce by\u0107 pe\u0142ne szcz\u0119\u015bcia, jak ka\u017cde inne \u017cycie.<\/p>\n\n\n\n<p><strong>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<p>Zata\u0144czy\u0142bym walca! A tak\u017ce bym biega\u0142! Obie rzeczy - tak szybko, jak tylko mog\u0119, aby poczu\u0107 wiatr!<\/p>\n\n\n\n<p>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: <a href=\"https:\/\/www.lgmd-info.org\/pl\/spotlight-interviews\/\">http:\/\/lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d&nbsp; Name:&nbsp; Tatyana&nbsp;&nbsp; Age: 33 yrs. old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":3559,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[],"class_list":["post-3558","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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