{"id":1980,"date":"2018-06-03T16:24:02","date_gmt":"2018-06-03T21:24:02","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1980"},"modified":"2018-06-03T16:24:02","modified_gmt":"2018-06-03T21:24:02","slug":"anne","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/06\/03\/anne\/","title":{"rendered":"OSOBA Z LGMD: Anne"},"content":{"rendered":"

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

Nazwa<\/strong>: Ania\u00a0 \u00a0Wiek<\/strong>: 56 lat\u00a0\u00a0\"\"<\/a><\/p>\n

Kraj<\/strong>: Stany Zjednoczone<\/p>\n

Podtyp LGMD<\/strong>: LGMD2A - znana r\u00f3wnie\u017c jako kalpainopatia<\/p>\n

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

Dystrofi\u0119 mi\u0119\u015bniow\u0105 zdiagnozowano u mnie w wieku oko\u0142o 4 lat. Konkretna diagnoza 2A pojawi\u0142a si\u0119 dopiero po przeprowadzeniu testu DNA w wieku 46 lat.<\/p>\n

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

Moim pierwszym objawem by\u0142o chodzenie na palcach i przeczucie, kt\u00f3re moja mama mia\u0142a, \u017ce co\u015b jest nie tak.<\/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.<\/p>\n

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

Trudno jest mi pozosta\u0107 cz\u0119\u015bci\u0105 spo\u0142ecze\u0144stwa. Brak mo\u017cliwo\u015bci wej\u015bcia do dom\u00f3w innych ludzi, wskoczenia do samochodu i pojechania lub \u0142atwego latania do innych miejsc sprawia, \u017ce czuj\u0119 si\u0119 wykluczony. Gdy z trudem si\u0119 ubieram, a potem s\u0142ysz\u0119 o wszystkich wspania\u0142ych rzeczach, kt\u00f3re robi\u0105 moi przyjaciele i rodzina, jest to zniech\u0119caj\u0105ce. Chc\u0119 uczestniczy\u0107 w \u017cyciu ludzi, a nie tylko obserwowa\u0107 ich z boku.<\/p>\n

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

Jestem dumny z tego, \u017ce uko\u0144czy\u0142em studia i odnios\u0142em sukces zawodowy. Poruszanie si\u0119 po \u015bwiecie korporacji i konkurowanie o nowe stanowiska by\u0142o trudne, ale uda\u0142o mi si\u0119 to zrobi\u0107! Chocia\u017c nie jestem ju\u017c w stanie pracowa\u0107, \u015bwiadomo\u015b\u0107, \u017ce uda\u0142o mi si\u0119 odnie\u015b\u0107 sukces, gdy moje cia\u0142o si\u0119 pogarsza\u0142o, sprawia, \u017ce czuj\u0119 si\u0119 dobrze.<\/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

My\u015bl\u0119, \u017ce choroba LGMD nauczy\u0142a mnie ustala\u0107 priorytety. Nie tylko zada\u0144, ale tak\u017ce jako\u015bci \u017cycia. Mam ograniczon\u0105 energi\u0119 i nauczy\u0142am si\u0119 wydawa\u0107 j\u0105 na rzeczy, kt\u00f3re maj\u0105 sens w szerszej perspektywie. Brudne naczynia w zlewie nie s\u0105 tak wa\u017cne, jak sp\u0119dzenie czasu z m\u0119\u017cem lub przyjaci\u00f3\u0142k\u0105.<\/p>\n

Wierz\u0119 r\u00f3wnie\u017c, \u017ce moje w\u0142asne zmagania pomog\u0142y mi by\u0107 bardziej wsp\u00f3\u0142czuj\u0105cym dla innych, kt\u00f3rzy zmagaj\u0105 si\u0119 z trudno\u015bciami.<\/p>\n

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

Chcia\u0142bym, aby wiedzieli, jak wyniszczaj\u0105ca jest to choroba i \u017ce mo\u017cna j\u0105 wyleczy\u0107! Dzi\u0119ki datkom na badania inni mog\u0105 pom\u00f3c nam wyleczy\u0107 t\u0119 chorob\u0119.<\/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

Pobieg\u0142abym do mojego m\u0119\u017ca i mocno go przytuli\u0142a!<\/p>\n

 <\/p>\n

*** Prosimy o LIKE, COMMENT i SHARE tego postu, aby pom\u00f3c zwi\u0119kszy\u0107 \u015bwiadomo\u015b\u0107 na temat LGMD!<\/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 pod adresem https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSpotlight Interview\u201d Name:\u00a0 Anne\u00a0 \u00a0Age:\u00a0 56 yrs. old\u00a0\u00a0 Country:\u00a0 […]<\/p>","protected":false},"author":1,"featured_media":1981,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-1980","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Anne - 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\/2018\/06\/03\/anne\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Anne - 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