{"id":1580,"date":"2017-09-22T12:01:04","date_gmt":"2017-09-22T17:01:04","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1580"},"modified":"2017-09-22T12:01:04","modified_gmt":"2017-09-22T17:01:04","slug":"hillary","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2017\/09\/22\/hillary\/","title":{"rendered":"OSOBA Z LGMD: Hillary"},"content":{"rendered":"<p><span style=\"color: #000000;\"><strong>LGMD \"WYWIAD W \u015aWIETLE REFLEKTOR\u00d3W\"<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>NAZWA:<\/strong>\u00a0 Hillary \u00a0\u00a0<strong>WIEK:<\/strong>\u00a0 32 lata<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2017\/09\/LGMD2A-Hillary-K.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1579 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\/2017\/09\/LGMD2A-Hillary-K-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>KRAJ:<\/strong>\u00a0 USA<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Podtyp LGMD:<\/strong>\u00a0 LGMD2A \/ kalpainopatia<\/span><!--more--><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"color: #000000;\"><strong>W jakim wieku zosta\u0142e\u015b zdiagnozowany?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Zdiagnozowano mnie w wieku 13 lat.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Jakie by\u0142y pierwsze objawy?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Moim pierwszym objawem by\u0142y napi\u0119te \u015bci\u0119gna Achillesa, wysokie \u0142uki i powolny bieg. Zacz\u0105\u0142em biega\u0107 tak jak m\u00f3j starszy brat, u kt\u00f3rego zdiagnozowano LGMD2A w tym samym czasie co u mnie.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Czy masz innych cz\u0142onk\u00f3w rodziny cierpi\u0105cych na LGMD?<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\">Tak, m\u00f3j starszy brat (5 lat starszy) r\u00f3wnie\u017c ma LGMD2A.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Co uwa\u017casz za najwi\u0119ksze wyzwanie w \u017cyciu z LGMD?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Najtrudniejsz\u0105 rzecz\u0105 w LGMD2A jest to, \u017ce ci\u0105gle si\u0119 zmienia. W ci\u0105gu ostatnich 20 lat wymy\u015bli\u0142em kreatywne sposoby na wykonywanie codziennych zada\u0144. Zadania tak proste, jak samodzielne p\u00f3j\u015bcie do toalety, musia\u0142y by\u0107 wielokrotnie dostosowywane i odtwarzane. W pewnym momencie u\u017cywa\u0142em przedramion, czo\u0142a i uchwyt\u00f3w, aby dos\u0142ownie wspi\u0105\u0107 si\u0119 po \u015bcianie z pozycji siedz\u0105cej na toalecie. Poniewa\u017c choroba ci\u0105gle si\u0119 zmienia, moje obej\u015bcia i \"rozwi\u0105zania\" dzia\u0142aj\u0105 tylko przez kilka lat, a potem wracam do deski kre\u015blarskiej, aby wymy\u015bli\u0107 co\u015b nowego.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Jakie jest twoje najwi\u0119ksze osi\u0105gni\u0119cie?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Moja rodzina jest moim najwi\u0119kszym osi\u0105gni\u0119ciem. O\u017ceni\u0142em si\u0119 w wieku 23 lat, kiedy by\u0142em jeszcze bardzo sprawn\u0105 osob\u0105. W ci\u0105gu 9 kr\u00f3tkich lat jestem teraz pe\u0142noprawnym u\u017cytkownikiem w\u00f3zka inwalidzkiego. M\u00f3j m\u0105\u017c i ja mieli\u015bmy zaszczyt adoptowa\u0107 dw\u00f3jk\u0119 pi\u0119knych dzieci. M\u00f3j m\u0105\u017c i dw\u00f3jka dzieci s\u0105 dla mnie wszystkim. \u017bycie nie zawsze jest \u0142atwe, ale z t\u0105 tr\u00f3jk\u0105 u boku (lub na kolanach) przypominam sobie, jak pi\u0119kne jest \u017cycie. Kiedy po raz pierwszy zdiagnozowano u mnie chorob\u0119, zawsze martwi\u0142am si\u0119, jak b\u0119d\u0119 goni\u0107 moje dzieci lub ratowa\u0107 je przed ucieczk\u0105 na ulic\u0119. Nigdy nie wyobra\u017ca\u0142am sobie siebie na w\u00f3zku inwalidzkim goni\u0105cej je! Czy wiesz, \u017ce w\u00f3zki inwalidzkie mog\u0105 porusza\u0107 si\u0119 z pr\u0119dko\u015bci\u0105 do 7 mil na godzin\u0119? Okaza\u0142o si\u0119, \u017ce nie mam si\u0119 czym martwi\u0107. Jestem w stanie pracowa\u0107 w niepe\u0142nym wymiarze godzin z domu i godzi\u0107 obowi\u0105zki \u017cony i matki.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Jak LGMD wp\u0142yn\u0119\u0142o na to, \u017ce sta\u0142e\u015b si\u0119 osob\u0105, kt\u00f3r\u0105 jeste\u015b dzisiaj:<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\">Kiedy mia\u0142em 13 lat gra\u0142em w koszyk\u00f3wk\u0119, siatk\u00f3wk\u0119 i softball. Sport by\u0142 dla mnie wszystkim. Jak mo\u017cna sobie wyobrazi\u0107, diagnoza by\u0142a dla mnie ca\u0142kowitym szokiem i przez jaki\u015b czas zaprzecza\u0142am. Podczas pr\u00f3b do dru\u017cyny siatkarskiej JV by\u0142em ca\u0142kowicie zszokowany, \u017ce moi trenerzy nie s\u0105dzili, \u017ce nad\u0105\u017c\u0119. Postanowili pozwoli\u0107 mi gra\u0107, ale pod koniec sezonu zaakceptowa\u0142em fakt, \u017ce nie jestem tak szybki jak moi koledzy z dru\u017cyny. To by\u0142 emocjonalny cios. Na szcz\u0119\u015bcie, pod wp\u0142ywem moich rodzic\u00f3w i przyjaci\u00f3\u0142, zdecydowa\u0142em si\u0119 spr\u00f3bowa\u0107 nowych rzeczy i kandydowa\u0142em do samorz\u0105du uczniowskiego oraz by\u0142em redaktorem w roczniku. Bycie zaj\u0119tym pomog\u0142o mi i znalaz\u0142em nowe rzeczy, kt\u00f3re kocha\u0142em. Do\u015bwiadczenia i mo\u017cliwo\u015bci, kt\u00f3re mia\u0142em, pomog\u0142y mi uzyska\u0107 stypendium na studia i doprowadzi\u0142y do wi\u0119kszej liczby mo\u017cliwo\u015bci przyw\u00f3dztwa na kampusie mojej uczelni. Dodatkowo mia\u0142em okazj\u0119 pracowa\u0107 w bran\u017cy hotelarskiej przez ostatnie 14 lat, a teraz mam stanowisko, kt\u00f3re pozwala mi pracowa\u0107 z domu. Bycie zaj\u0119tym zawsze by\u0142o jednym z najlepszych lekarstw na moje zdrowie psychiczne i szczerze m\u00f3wi\u0105c, nie pami\u0119tam czasu, kiedy nie by\u0142em zaj\u0119ty!<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Co chcia\u0142by\u015b, aby \u015bwiat dowiedzia\u0142 si\u0119 o LGMD?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Podnoszenie \u015bwiadomo\u015bci na temat rzadkich chor\u00f3b nigdy nie jest \u0142atwym zadaniem. Kiedy zobaczysz stra\u017cak\u00f3w podczas Filling the Boot lub zobaczysz Shamrocks w lokalnych firmach, prosimy o dalsze przekazywanie darowizn. Pieni\u0105dze te pomagaj\u0105 w dalszych badaniach i wysy\u0142aniu dzieci na ob\u00f3z MDA. Mam nadziej\u0119, \u017ce prowadzone obecnie badania zmieni\u0105 \u017cycie.<\/span><\/p>\n<p><span style=\"color: #000000;\"><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>:<\/span><\/p>\n<p><span style=\"color: #000000;\">Pierwsz\u0105 rzecz\u0105, jak\u0105 bym zrobi\u0142, to goni\u0142bym za moimi dzie\u0107mi, wyrzuca\u0142 je w powietrze i bawi\u0142 si\u0119, a\u017c zakr\u0119ci\u0142oby mi si\u0119 w g\u0142owie!<\/span><\/p>\n<p>&nbsp;<\/p>\n<p><span style=\"color: #000000;\">* * * Aby przeczyta\u0107 wi\u0119cej wywiad\u00f3w \"LGMD Spotlight Interviews\" lub zg\u0142osi\u0107 si\u0119 na ochotnika do udzia\u0142u w nadchodz\u0105cym wywiadzie, odwied\u017a nasz\u0105 stron\u0119 internetow\u0105 pod adresem<\/span> \u00a0<a href=\"https:\/\/www.lgmd-info.org\/pl\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>\n<p>&nbsp;<\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d NAME:\u00a0 Hillary \u00a0\u00a0AGE:\u00a0 32 yrs. old COUNTRY:\u00a0 [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1579,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-1580","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":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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