{"id":1252,"date":"2016-06-24T14:08:02","date_gmt":"2016-06-24T19:08:02","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1252"},"modified":"2016-06-24T14:08:02","modified_gmt":"2016-06-24T19:08:02","slug":"donna-marie","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2016\/06\/24\/donna-marie\/","title":{"rendered":"OSOBA Z LGMD: Donna-Marie"},"content":{"rendered":"

06\/24\/2016<\/p>\n

LGMD \"Wywiad w centrum uwagi\"<\/p>\n

Nazwa<\/strong>: Donna-Marie \u00a0 \u00a0 \u00a0Wiek<\/strong>: 32 lata\"LGMD2i<\/a><\/p>\n

Kraj<\/strong>: Wielka Brytania<\/p>\n

Podtyp LGMD<\/strong>: LGMD2i<\/p>\n

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

Rozpocz\u0105\u0142em testy w wieku 12 lat, w wieku 13 lat zdiagnozowano u mnie dystrofi\u0119 mi\u0119\u015bniow\u0105, a kilka lat p\u00f3\u017aniej jej podtyp.<\/p>\n

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

Generalnie by\u0142em wolniejszy ni\u017c inne dzieci na lekcjach wychowania fizycznego. Moi nauczyciele zauwa\u017cyli, \u017ce nie nad\u0105\u017cam, ale wiedzieli, \u017ce za bardzo si\u0119 staram!<\/p>\n

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

Nie, jestem 100% unikalny J<\/p>\n

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

Najwi\u0119kszym wyzwaniem dla mnie jest to, jak wp\u0142ywa to na mnie psychicznie; wiem, \u017ce mam szcz\u0119\u015bcie z moj\u0105 LGMD i \u017ce mog\u0142abym mie\u0107 znacznie wi\u0119ksze problemy, wi\u0119c staram si\u0119 nie narzeka\u0107 na to zbytnio, ale sp\u0119dzi\u0142am kilka lat, chc\u0105c ukry\u0107 si\u0119 przed lud\u017ami, kt\u00f3rzy gapi\u0105 si\u0119 na mnie i moje utykanie. M\u00f3j czteroletni ch\u0142opak zmieni\u0142 moje podej\u015bcie do niepe\u0142nosprawno\u015bci bardziej, ni\u017c mog\u0142abym sobie kiedykolwiek wyobrazi\u0107 i chocia\u017c nie przejmuj\u0119 si\u0119 ju\u017c tym, \u017ce ludzie na mnie patrz\u0105, czasami mam trudno\u015bci, gdy wychodzimy, poniewa\u017c czuj\u0119 si\u0119 za niego za\u017cenowana, gdy ludzie si\u0119 na nas gapi\u0105 i czuj\u0119, \u017ce powinien by\u0107 z kim\u015b \"normalnym\" w jego wieku.<\/p>\n

Nienawidz\u0119 te\u017c tego, \u017ce nie mog\u0119 uciec podczas k\u0142\u00f3tni, zw\u0142aszcza je\u015bli siedz\u0119 na niskim krze\u015ble, ha ha!<\/p>\n

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

Chcia\u0142bym powiedzie\u0107, \u017ce moim najwi\u0119kszym osi\u0105gni\u0119ciem jest co\u015b zwi\u0105zanego z karier\u0105, ale musz\u0119 przyzna\u0107, \u017ce w tym dziale nie mam si\u0119 czym chwali\u0107. Ale uwa\u017cam za osi\u0105gni\u0119cie to, \u017ce udaje mi si\u0119 i\u015b\u0107 naprz\u00f3d i pozosta\u0107 pozytywnym. Mam skromn\u0105 karier\u0119, ale nadal pracuj\u0119 i utrzymuj\u0119 kontakty towarzyskie. Nie staram si\u0119 ju\u017c ukrywa\u0107, czuj\u0105c si\u0119 jak Quasimodo!<\/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

Choroba LGMD sprawi\u0142a, \u017ce jestem wdzi\u0119czny za niesamowitych ludzi, kt\u00f3rych mam w \u017cyciu. Nie mog\u0142abym \u017cyczy\u0107 sobie lepszej rodziny, partnera czy przyjaci\u00f3\u0142.<\/p>\n

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

Chcia\u0142bym, aby \u015bwiat dowiedzia\u0142 si\u0119, \u017ce LGMD nie wp\u0142ywa na m\u00f3j m\u00f3zg ani oczy!<\/strong><\/p>\n

Nie potrzebuj\u0119, by m\u00f3wiono do mnie jak do dziecka i widz\u0119 kuksa\u0144ce, szepty i spojrzenia. <\/strong><\/p>\n

\u00a0<\/strong><\/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

Jest tak wiele rzeczy, kt\u00f3re m\u00f3g\u0142bym tu wymieni\u0107, ale prawda jest taka, \u017ce my\u015bl\u0119, \u017ce pierwsz\u0105 rzecz\u0105, kt\u00f3r\u0105 bym zrobi\u0142, jest wyj\u015bcie i \u015bwi\u0119towanie z tak du\u017c\u0105 ilo\u015bci\u0105 drink\u00f3w, jak tylko mog\u0119 sobie poradzi\u0107 i nie martwi\u0107 si\u0119, \u017ce je\u015bli upadn\u0119, to zostan\u0119 na dnie! I mo\u017ce dorzuci\u0142abym taniec na kilku barach J<\/p>\n

Ale poniewa\u017c by\u0142a to do\u015b\u0107 n\u0119dzna odpowied\u017a, chcia\u0142abym doda\u0107, \u017ce potem wyjecha\u0142abym na mi\u0142e wakacje z moim ch\u0142opakiem i rodzin\u0105, gdzie nikt z nich nie musia\u0142by si\u0119 martwi\u0107 o to, czy pod\u0142o\u017ce jest zbyt nier\u00f3wne, czy s\u0105 jakie\u015b schody, czy nie mog\u0119 chodzi\u0107 po pla\u017cy, wchodzi\u0107 \/ wychodzi\u0107 z basenu lub wstawa\u0107 z krzes\u0142a.<\/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.<\/p>","protected":false},"excerpt":{"rendered":"

06\/24\/2016 LGMD \u201cSpotlight Interview\u201d Name:\u00a0 Donna-Marie \u00a0 \u00a0 \u00a0Age: 32 […]<\/p>","protected":false},"author":1,"featured_media":1251,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[61],"class_list":["post-1252","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i","tag-lgmd2i-united-kingdom"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Donna-Marie - 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\/2016\/06\/24\/donna-marie\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Donna-Marie - 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