{"id":1192,"date":"2016-04-30T08:00:30","date_gmt":"2016-04-30T13:00:30","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1192"},"modified":"2016-04-30T08:00:30","modified_gmt":"2016-04-30T13:00:30","slug":"rebecca","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2016\/04\/30\/rebecca\/","title":{"rendered":"OSOBA Z LGMD: Rebecca"},"content":{"rendered":"

04\/30\/2016 \u00a0<\/strong>LGMD \"Wywiad w centrum uwagi\"<\/strong><\/p>\n

 <\/p>\n

NAZWA<\/strong>: Rebecca\u00a0\u00a0\u00a0 WIEK<\/strong>29 lat\"LGMD2A<\/a><\/p>\n

KRAJ<\/strong>: Australia<\/p>\n

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

 <\/p>\n

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

W wieku 26 lat zdiagnozowano u mnie LGMD2A.<\/p>\n

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

Moje pierwsze objawy obejmowa\u0142y: trudno\u015bci z wchodzeniem po schodach i pochy\u0142o\u015bciach, a tak\u017ce niemo\u017cno\u015b\u0107 podniesienia si\u0119 bez u\u017cycia r\u0105k.<\/p>\n

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

Jestem jedyn\u0105 osob\u0105 z 4.<\/p>\n

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

Najwi\u0119kszym wyzwaniem jest dla mnie walka ze zm\u0119czeniem. Bardzo trudno jest znale\u017a\u0107 r\u00f3wnowag\u0119 mi\u0119dzy robieniem zbyt wiele i zbyt ma\u0142o. Zauwa\u017cy\u0142em, \u017ce dostosowuj\u0119 si\u0119 do zmian w zasadzie ka\u017cdego roku. Wyzwaniem jest r\u00f3wnie\u017c to, by nie by\u0107 dla siebie tak surowym, gdy widz\u0119, \u017ce inni wykonuj\u0105 czynno\u015bci, kt\u00f3rych ja nie jestem w stanie zrobi\u0107. Wyzwaniem mo\u017ce by\u0107 poproszenie o pomoc, gdy nie jestem w stanie samodzielnie wykona\u0107 jakiego\u015b zadania. B\u00f3l - nie pami\u0119tam, kiedy ostatnio obudzi\u0142em si\u0119 bez b\u00f3lu, dyskomfortu i poczucia krucho\u015bci.<\/p>\n

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

Moja c\u00f3rka ma 10 lat i jest moim najwi\u0119kszym osi\u0105gni\u0119ciem. Mo\u017ce nie jestem dobra w niekt\u00f3rych rzeczach w \u017cyciu, ale mog\u0119 szczerze powiedzie\u0107, \u017ce jestem najlepsz\u0105 mam\u0105! Ona jest moim \u017cyciem. A poniewa\u017c dorasta, zaczyna si\u0119 mn\u0105 opiekowa\u0107 na wi\u0119cej ni\u017c jeden spos\u00f3b.<\/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

Mo\u017ce i jestem coraz s\u0142abszy fizycznie, ale sta\u0142em si\u0119 silniejszy psychicznie.<\/p>\n

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

To usuwa wszystko, co wiesz.<\/p>\n

Chc\u0119 r\u00f3wnie\u017c, aby dowiedzieli si\u0119 o Coalition to Cure Calpain 3 - organizacji skupiaj\u0105cej si\u0119 na znalezieniu leku i terapii dla LGMD2A.<\/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

Gdybym jutro zosta\u0142 \"wyleczony\", wyszed\u0142bym z rodzin\u0105 bez \u017cadnych ogranicze\u0144. Biega\u0142bym z c\u00f3rk\u0105 i wszed\u0142bym po 100 schodach.<\/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:\u00a0 https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

04\/30\/2016 \u00a0LGMD \u201cSpotlight Interview\u201d   NAME:\u00a0 Rebecca\u00a0\u00a0\u00a0 AGE: 29 years […]<\/p>","protected":false},"author":1,"featured_media":1193,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[51,12,15],"class_list":["post-1192","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-australia","tag-calpainopathy","tag-lgmd2a"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Rebecca - 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\/04\/30\/rebecca\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Rebecca - 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