{"id":1403,"date":"2017-01-28T09:30:12","date_gmt":"2017-01-28T15:30:12","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1403"},"modified":"2017-01-28T09:30:12","modified_gmt":"2017-01-28T15:30:12","slug":"brenda","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2017\/01\/28\/brenda\/","title":{"rendered":"OSOBA Z LGMD: Brenda"},"content":{"rendered":"

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

Nazwa<\/strong>: Brenda\u00a0 Wiek<\/strong>: 55 lat\"\"<\/a><\/p>\n

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

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

 <\/p>\n

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

Zdiagnozowano mnie, gdy mia\u0142em 50 lat.<\/p>\n

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

Moje pierwsze objawy obejmowa\u0142y: upadki, opadanie nadgarstka, nietypowy ch\u00f3d podczas chodzenia z biodrami wysuni\u0119tymi do przodu, skurcze n\u00f3g i szybk\u0105 utrat\u0119 wagi.<\/p>\n

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

\u017baden inny cz\u0142onek rodziny nie cierpi na LGMD.<\/p>\n

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

Najwi\u0119kszym wyzwaniem w \u017cyciu z LGMD jest to, \u017ce wygl\u0105dam normalnie, a choroba trwa wiecznie.<\/p>\n

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

Niekt\u00f3re z moich najwi\u0119kszych osi\u0105gni\u0119\u0107 to: jazda na nartach w Alpach, sp\u0142ywy morskie na wybrze\u017cu Atlantyku, sp\u0142ywy morskie na jeziorze Champlain i jazda na rolkach w stanie Vermont. Ponadto wychowanie zdrowej 17-letniej c\u00f3rki i bycie \u017con\u0105 przez 25 lat z wyj\u0105tkowym m\u0119\u017cem, kt\u00f3ry kocha mnie bez wzgl\u0119du na wszystko! Od 22 lat pracuj\u0119 r\u00f3wnie\u017c jako dyrektor rekreacji w jedynym 5-gwiazdkowym kurorcie w Vermont.<\/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

Mam pozytywne nastawienie i pozostaj\u0119 zdrowy i szcz\u0119\u015bliwy bez wzgl\u0119du na wszystko.<\/p>\n

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

Chc\u0119 powiedzie\u0107 wszystkim, \u017ce wci\u0105\u017c jestem t\u0105 sam\u0105 Brend\u0105, kt\u00f3ra ta\u0144czy\u0142a przy ka\u017cdej okazji, robi\u0142a k\u00f3\u0142ka i wygi\u0119cia w ty\u0142 na piaszczystej pla\u017cy w Gay Head Cliffs w Martha's Vineyard. Ta, kt\u00f3ra jako pierwsza pokona\u0142a slalom na nartach wodnych, jako pierwsza je\u017adzi\u0142a na nartach zjazdowych, biegowych i telemarkowych oraz jako pierwsza je\u017adzi\u0142a na nartach w Alpach w Europie. Jako pierwszy zjecha\u0142 na nartach ze \u015bciany Mt. Washington, Tuckerman's Ravine. Przez 30 lat je\u017adzi\u0142 na nartach po wszystkich czarnych i podw\u00f3jnie czarnych diamentowych trasach w o\u015brodku narciarskim Killington w Vermont, w tym po wszystkich trasach le\u015bnych. Nigdy nie pozwol\u0119, by ta choroba nada\u0142a mi etykiet\u0119 lub doprowadzi\u0142a mnie do stanu le\u017cenia w \u0142\u00f3\u017cku. Dr Anthony Amato powiedzia\u0142 mi \"Dobre, d\u0142ugie \u017cycie\" w wieku 50 lat, kiedy zosta\u0142em zdiagnozowany. Chc\u0119 da\u0107 \u015bwiatu zna\u0107, \u017ce kto\u015b niepe\u0142nosprawny jest taki jak Ty!<\/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

Ta\u0144czy\u0107 z m\u0119\u017cem bez zm\u0119czenia. Je\u017adzi\u0107 na nartach w puchu z perfekcyjnymi skr\u0119tami. Spacer po piaszczystej pla\u017cy bez zm\u0119czenia. Zn\u00f3w w\u0119drowa\u0107 w dobrym tempie bez b\u00f3lu staw\u00f3w i nadgarstk\u00f3w. Je\u017adzi\u0107 na rowerze z kobietami i by\u0107 w stanie dotrzyma\u0107 im kroku. Je\u017adzi\u0107 na rowerze z grubymi oponami po \u015bniegu.<\/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:\u00a0 Brenda\u00a0 Age:\u00a0 55 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":1404,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-1403","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: Brenda - 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\/01\/28\/brenda\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Brenda - 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