{"id":1651,"date":"2018-01-08T10:22:50","date_gmt":"2018-01-08T16:22:50","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1651"},"modified":"2018-01-08T10:22:50","modified_gmt":"2018-01-08T16:22:50","slug":"jill-2","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/01\/08\/jill-2\/","title":{"rendered":"OSOBA Z LGMD: Jill"},"content":{"rendered":"<p><span style=\"color: #000000;\"><strong>Wywiad LGMD Spotlight<\/strong><\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Nazwa<\/strong><\/span>:<span style=\"color: #000000;\">\u00a0 \u00a0 Jill\u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0 \u00a0\u00a0<strong>Wiek<\/strong>: 33 lata<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/01\/LGMD2i-Jill-W.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1650 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\/2018\/01\/LGMD2i-Jill-W-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Kraj<\/strong>:    Stany Zjednoczone<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Podtyp LGMD<\/strong>:    LGMD2i<\/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 27 lat.<\/span><\/p>\n<p><span style=\"color: #000000;\"><strong>Jakie by\u0142y pierwsze objawy?<\/strong>:<\/span><\/p>\n<p><span style=\"color: #000000;\">W szkole podstawowej zawsze by\u0142em ostatnim dzieckiem, kt\u00f3re przekracza\u0142o lini\u0119 mety. <\/span>si\u0142ownia<span style=\"color: #000000;\">. Pami\u0119tam te\u017c, \u017ce musia\u0142am opuszcza\u0107 zaj\u0119cia szkolne z powodu bolesnych skurcz\u00f3w n\u00f3g. By\u0142am jednak w zespole tanecznym i mia\u0142am <\/span>super normalny<span style=\"color: #000000;\"> dzieci\u0144stwo. Po urodzeniu mojego pierwszego dziecka w 2008 roku, w wieku 23 lat, zacz\u0119\u0142am zg\u0142asza\u0107 si\u0119 na ostry dy\u017cur ze zm\u0119czeniem i b\u00f3lem. Pami\u0119tam, jak powiedzia\u0142am mojemu m\u0119\u017cowi: \"Co\u015b jest ze mn\u0105 nie tak i pewnego dnia dowiem si\u0119, co to jest\". Po narodzinach mojej drugiej c\u00f3rki w 2010 roku zmaga\u0142am si\u0119 z fizyczno\u015bci\u0105 posiadania malucha i noworodka. Nie by\u0142am ju\u017c w stanie wej\u015b\u0107 po schodach bez wi\u0119kszego wysi\u0142ku. Wci\u0105\u017c my\u015bla\u0142am \"mo\u017ce tak w\u0142a\u015bnie czuj\u0105 si\u0119 zm\u0119czone mamy\". W 2011 roku, po z\u0142apaniu wirusa i gor\u0105czce, przesz\u0142am rabdomioliz\u0119. Posz\u0142am do lekarza z powa\u017cnym os\u0142abieniem, a moje CPK wynosi\u0142o 11 000. To w ko\u0144cu doprowadzi\u0142o nas na w\u0142a\u015bciw\u0105 \u015bcie\u017ck\u0119 i postawiono diagnoz\u0119 LGMD2I. Podobnie jak u wielu z was, droga do diagnozy by\u0142a d\u0142uga.<\/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;\">Nie, jestem homozygot\u0105 recesywn\u0105, wi\u0119c oboje moi rodzice byli nosicielami. Na szcz\u0119\u015bcie m\u00f3j brat i siostra nie s\u0105 nosicielami.<\/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;\">Moje dziewczynki by\u0142y niemowl\u0119tami, kiedy zdiagnozowano u mnie nowotw\u00f3r. Rok p\u00f3\u017aniej u mojego m\u0119\u017ca zdiagnozowano raka m\u00f3zgu. Obawia\u0142am si\u0119, \u017ce nie b\u0119d\u0119 w stanie opiekowa\u0107 si\u0119 moj\u0105 rodzin\u0105. Sp\u0119dzi\u0142am wiele godzin martwi\u0105c si\u0119 o to, co si\u0119 z nami stanie. Staram si\u0119 \u017cy\u0107 chwil\u0105 i cieszy\u0107 si\u0119 dobrymi chwilami. To mo\u017ce by\u0107 trudne, aby utrzyma\u0107 \"g\u0142ow\u0119 w grze\" i nie przewidywa\u0107 mojego upadku lub pozwoli\u0107, by frustracja i b\u00f3l mnie zniech\u0119ci\u0142y. <\/span>do<span style=\"color: #000000;\"> \u0142\u00f3\u017cko. Jednak jestem tu dzisiaj. M\u00f3j m\u0105\u017c jest tu dzisiaj. Moje dzieci s\u0105 niesamowite i odporne. Pozostaj\u0119 wi\u0119c wdzi\u0119czna i kontynuujemy.<\/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;\">Moim najwi\u0119kszym osobistym osi\u0105gni\u0119ciem jest szcz\u0119\u015bcie. Ci\u0119\u017cko pracowa\u0142em, aby by\u0107 szcz\u0119\u015bliwym, pomimo naszych wyzwa\u0144. Jestem z tego naprawd\u0119 dumny.  To wyb\u00f3r, kt\u00f3rego staram si\u0119 dokonywa\u0107 ka\u017cdego dnia.<\/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;\">Czuj\u0119, \u017ce po diagnozie moje \u017cycie ma wi\u0119kszy sens. Kocham moich ludzi bardziej intensywnie. Nauczy\u0142em si\u0119 zwalnia\u0107, bo musz\u0119, a to nie jest z\u0142y spos\u00f3b na \u017cycie. Jestem r\u00f3wnie\u017c wdzi\u0119czna za mo\u017cliwo\u015b\u0107 zrozumienia i empatii dla os\u00f3b cierpi\u0105cych na przewlek\u0142e choroby, b\u00f3l, smutek... wszystkie te niewidzialne choroby, kt\u00f3re tak \u0142atwo mo\u017cna b\u0142\u0119dnie zinterpretowa\u0107 jako lenistwo lub brak wysi\u0142ku. Widz\u0119 ci\u0119 i przykro mi, \u017ce jest ci\u0119\u017cko.<\/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;\">Chc\u0119, aby \u015bwiat dowiedzia\u0142 si\u0119, \u017ce LGMD jest chorob\u0105 dziedziczon\u0105 genetycznie, a nie \"niedoborem \u017cywieniowym\" lub wynikiem niechodzenia na si\u0142owni\u0119. To nie jest choroba, kt\u00f3r\u0105 ludzie wybieraj\u0105. Jest ona post\u0119puj\u0105ca i nie ma na ni\u0105 lekarstwa. Chocia\u017c pozytywne nastawienie i aktywno\u015b\u0107 fizyczna pomog\u0105, to nie zatrzymaj\u0105 post\u0119pu choroby. Moim zdaniem najlepsz\u0105 rzecz\u0105, jak\u0105 mo\u017cna powiedzie\u0107 osobie cierpi\u0105cej na LGMD jest: \"Wiem, \u017ce to trudne, ale wykonujesz tak dobr\u0105 robot\u0119\". By\u0142oby wspaniale, gdyby w przysz\u0142o\u015bci uda\u0142o si\u0119 znale\u017a\u0107 terapi\u0119 lub lekarstwo. Dobrze jest zachowa\u0107 nadziej\u0119.<\/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;\">Da\u0107 moim dziewczynkom przeja\u017cd\u017ck\u0119 na barana do szko\u0142y, zorganizowa\u0107 wielk\u0105 imprez\u0119 i wybra\u0107 si\u0119 na rodzinn\u0105 przeja\u017cd\u017ck\u0119 rowerow\u0105 wok\u00f3\u0142 naszego ulubionego jeziora.<\/span><\/p>\n<p>&nbsp;<\/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 <\/span>na <span style=\"color: #000000;\"><a style=\"color: #000000;\" href=\"https:\/\/www.lgmd-info.org\/pl\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a>\u00a0<\/span><\/p>\n<p><span style=\"color: #000000;\">* * * Prosimy o LIKE, COMMENT i SHARE tego postu, aby pom\u00f3c zwi\u0119kszy\u0107 \u015bwiadomo\u015b\u0107 na temat LGMD!<\/span><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD Spotlight Interview Name:\u00a0 \u00a0 Jill\u00a0 \u00a0 \u00a0 \u00a0 \u00a0 [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1650,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[83],"class_list":["post-1651","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i","tag-lgmd2i-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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