{"id":1195,"date":"2016-05-14T12:19:56","date_gmt":"2016-05-14T17:19:56","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1195"},"modified":"2016-05-14T12:19:56","modified_gmt":"2016-05-14T17:19:56","slug":"dave","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2016\/05\/14\/dave\/","title":{"rendered":"OSOBA Z LGMD: Dave"},"content":{"rendered":"<p>05\/14\/2016:<\/p>\n<p>LGMD \"Wywiad w centrum uwagi\"<\/p>\n<p><strong>Nazwa<\/strong>:  Dave\u00a0\u00a0\u00a0 <strong>Wiek<\/strong>27 lat<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/05\/LGMD2A-Dave-H.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1196 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/05\/LGMD2A-Dave-H-300x169.png\" alt=\"LGMD2A -Dave H\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Kraj<\/strong>: Australia<\/p>\n<p><strong>Podtyp LGMD<\/strong>:  LGMD 2A \/ kalpainopatia<\/p>\n<p>&nbsp;<\/p>\n<p><strong>W jakim wieku zosta\u0142e\u015b zdiagnozowany?<\/strong>:<\/p>\n<p>My\u015bl\u0119, \u017ce zdiagnozowano mnie w wieku oko\u0142o 14 lat. Wiem, \u017ce by\u0142o to w liceum.<\/p>\n<p><strong>Jakie by\u0142y pierwsze objawy?<\/strong>:<\/p>\n<p>W ka\u017cd\u0105 sobot\u0119 chodzi\u0142em na golfa, a kiedy wraca\u0142em do domu, musia\u0142em przespa\u0107 si\u0119 kilka godzin.   By\u0142em ca\u0142y obola\u0142y.   Moja mama zabra\u0142a mnie wi\u0119c do lekarza, \u017ceby sprawdzi\u0107, dlaczego ca\u0142y czas jestem zm\u0119czony.<\/p>\n<p><strong>Czy masz innych cz\u0142onk\u00f3w rodziny cierpi\u0105cych na LGMD? <\/strong><\/p>\n<p>Jestem jedynym cz\u0142onkiem mojej rodziny, kt\u00f3ry cierpi na jak\u0105kolwiek form\u0119 dystrofii mi\u0119\u015bniowej.<\/p>\n<p><strong>Co uwa\u017casz za najwi\u0119ksze wyzwanie w \u017cyciu z LGMD?<\/strong>:<\/p>\n<p>Najwi\u0119kszym problemem, z jakim si\u0119 boryka\u0142em, by\u0142o wyja\u015bnianie ludziom (rodzinie, przyjacio\u0142om i nieznajomym), na czym polega moja dystrofia mi\u0119\u015bniowa. My\u015bleli, \u017ce jestem zm\u0119czony, bo jestem leniwy.<\/p>\n<p>Sp\u0119dzi\u0142em noc w szpitalu z ogromnymi skurczami w nodze, kt\u00f3rych nie mog\u0142em uspokoi\u0107. Nie mog\u0142em normalnie chodzi\u0107 przez 3 tygodnie i nadal musia\u0142em pracowa\u0107 z b\u00f3lem.   Zawsze mia\u0142em problem z chodzeniem po schodach i noszeniem ci\u0119\u017ckich rzeczy przez d\u0142u\u017cszy czas.<\/p>\n<p><strong>Jakie jest twoje najwi\u0119ksze osi\u0105gni\u0119cie?<\/strong>:<\/p>\n<p>Moim najwi\u0119kszym osi\u0105gni\u0119ciem jest \u015blub z moj\u0105 \u017con\u0105 Rebecc\u0105 w lutym tego roku.   Sta\u0142a si\u0119 moj\u0105 si\u0142\u0105 i motywacj\u0105 do dalszego dzia\u0142ania.  Jestem kierowc\u0105 ci\u0119\u017car\u00f3wki w Australii w drugim pokoleniu i jestem z tego bardzo dumny!  Chocia\u017c moja praca mo\u017ce czasami sta\u0107 si\u0119 do\u015b\u0107 fizyczna i odbija si\u0119 to na mnie.   Moja \u017cona, Rebecca, pomaga mi przez to wszystko przej\u015b\u0107.  Jest moj\u0105 cudown\u0105 kobiet\u0105.<\/p>\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<p>Nauczy\u0142em si\u0119 s\u0142ucha\u0107 ludzi o ich stanie. Na Facebooku pozna\u0142am wielu wspania\u0142ych przyjaci\u00f3\u0142, z kt\u00f3rymi utrzymuj\u0119 kontakt. S\u0142ucham ich obaw i problem\u00f3w, a tak\u017ce pytam ich o rad\u0119. Przede wszystkim nauczy\u0142em si\u0119, \u017ce w porz\u0105dku jest prosi\u0107 o pomoc, gdy jej potrzebuj\u0119 - zamiast pr\u00f3bowa\u0107 robi\u0107 wszystko samemu.<\/p>\n<p><strong>Co chcia\u0142by\u015b, aby \u015bwiat dowiedzia\u0142 si\u0119 o LGMD?<\/strong>:<\/p>\n<p>Chc\u0119, aby \u015bwiat dowiedzia\u0142 si\u0119, \u017ce dystrofia mi\u0119\u015bniowa obr\u0119czy ko\u0144czyny dolnej istnieje!!!    To niewiarygodne, ile razy musia\u0142em wyja\u015bnia\u0107 ludziom moj\u0105 chorob\u0119, a oni prawie mi nie wierzyli.   Nie rozumiej\u0105, \u017ce mojej LGMD nie mo\u017cna naprawi\u0107 ani wyleczy\u0107 poprzez chodzenie na si\u0142owni\u0119.   Nie ma lekarstw ani metod leczenia LGMD.  Nie mamy kontroli nad nasz\u0105 chorob\u0105, jest ona cz\u0119\u015bci\u0105 nas samych.... cz\u0119\u015bci\u0105, z kt\u00f3r\u0105 si\u0119 zmagamy, ale to w\u0142a\u015bnie ona sprawia, \u017ce jeste\u015bmy tym, kim jeste\u015bmy.<\/p>\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<p>Moim osobistym celem, opr\u00f3cz posiadania rodziny.... , by\u0142oby ponowne granie w koszyk\u00f3wk\u0119. Uwielbia\u0142em j\u0105 w dzieci\u0144stwie. Zdecydowanie chcia\u0142bym wr\u00f3ci\u0107 na boisko i biega\u0107 tak d\u0142ugo, jak to tylko mo\u017cliwe.<\/p>\n<p>&nbsp;<\/p>\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: https:\/\/www.lgmd-info.org\/spotlight-interviews.<\/p>","protected":false},"excerpt":{"rendered":"<p>05\/14\/2016: LGMD \u201cSpotlight Interview\u201d Name:\u00a0 Dave\u00a0\u00a0\u00a0 Age: \u00a027 yrs. old [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1196,"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-1195","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":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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