{"id":5544,"date":"2021-10-17T02:17:57","date_gmt":"2021-10-17T02:17:57","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5544"},"modified":"2024-02-09T14:23:59","modified_gmt":"2024-02-09T14:23:59","slug":"individual-with-lgmd-jade","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2021\/10\/17\/individual-with-lgmd-jade\/","title":{"rendered":"INDYWIDUALNA OSOBA Z LGMD: Jade"},"content":{"rendered":"<div class=\"fusion-fullwidth fullwidth-box fusion-builder-row-1 fusion-flex-container nonhundred-percent-fullwidth non-hundred-percent-height-scrolling\" style=\"--awb-border-radius-top-left:0px;--awb-border-radius-top-right:0px;--awb-border-radius-bottom-right:0px;--awb-border-radius-bottom-left:0px;--awb-flex-wrap:wrap;\" ><div class=\"fusion-builder-row fusion-row fusion-flex-align-items-flex-start fusion-flex-content-wrap\" style=\"max-width:1456px;margin-left: calc(-4% \/ 2 );margin-right: calc(-4% \/ 2 );\"><div class=\"fusion-layout-column fusion_builder_column fusion-builder-column-0 fusion_builder_column_1_1 1_1 fusion-flex-column\" style=\"--awb-bg-size:cover;--awb-width-large:100%;--awb-margin-top-large:0px;--awb-spacing-right-large:1.92%;--awb-margin-bottom-large:0px;--awb-spacing-left-large:1.92%;--awb-width-medium:100%;--awb-spacing-right-medium:1.92%;--awb-spacing-left-medium:1.92%;--awb-width-small:100%;--awb-spacing-right-small:1.92%;--awb-spacing-left-small:1.92%;\"><div class=\"fusion-column-wrapper fusion-flex-justify-content-flex-start fusion-content-layout-column\"><div class=\"fusion-text fusion-text-1\"><p><img decoding=\"async\" class=\"lazyload size-medium wp-image-5545 alignright\" src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/10\/LGMD2A-Jade-c-300x169.png\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/10\/LGMD2A-Jade-c-300x169.png\" alt=\" \" width=\"300\" height=\"169\" srcset=\"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-srcset=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/10\/LGMD2A-Jade-c-200x113.png 200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/10\/LGMD2A-Jade-c-300x169.png 300w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/10\/LGMD2A-Jade-c-400x225.png 400w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/10\/LGMD2A-Jade-c-600x338.png 600w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/10\/LGMD2A-Jade-c-768x432.png 768w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/10\/LGMD2A-Jade-c-800x450.png 800w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/10\/LGMD2A-Jade-c-1024x576.png 1024w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/10\/LGMD2A-Jade-c-1200x675.png 1200w, https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2021\/10\/LGMD2A-Jade-c.png 1280w\" data-sizes=\"auto\" data-orig-sizes=\"(max-width: 300px) 100vw, 300px\" \/><\/p>\n<h3><strong>LGMD \"WYWIAD W \u015aWIETLE REFLEKTOR\u00d3W\"<\/strong><\/h3>\n<p><strong>Nazwa<\/strong>:    Jade<\/p>\n<p><strong>Wiek<\/strong>20 lat<\/p>\n<p><strong>Kraj<\/strong>:  Stany Zjednoczone<\/p>\n<p><strong>Podtyp LGMD<\/strong>:  LGMD 2A\/R1 zwi\u0105zane z kalpain\u0105 3<\/p>\n<p><strong>W jakim wieku zosta\u0142e\u015b zdiagnozowany?<\/strong>?<\/p>\n<p>Oficjalnie zdiagnozowano mnie w marcu 2021 roku, wi\u0119c to wszystko jest dla mnie wci\u0105\u017c nowe.<\/p>\n<p><strong>Jakie by\u0142y Twoje pierwsze SYMPTOMY?<\/strong><\/p>\n<p>Kiedy po raz pierwszy zauwa\u017cy\u0142em objawy, my\u015bla\u0142em, \u017ce jestem po prostu odwodniony.  Czu\u0142em si\u0119 s\u0142aby, moje nogi by\u0142y jak galaretka i bola\u0142y mnie biodra.  Teraz, gdy jestem \u015bwiadomy swojej diagnozy, mog\u0119 spojrze\u0107 wstecz i zobaczy\u0107 objawy ju\u017c w wieku 12 lat.  Gra\u0142em w softball i nie mog\u0142em sprawi\u0107, by moje nogi biega\u0142y szybko, bez wzgl\u0119du na to, jak bardzo si\u0119 stara\u0142em.  Zawsze mia\u0142em te\u017c nienormalnie du\u017ce \u0142ydki, ale teraz wiem, \u017ce mo\u017ce si\u0119 tak dzia\u0107 z powodu braku si\u0142y mi\u0119\u015bniowej w mi\u0119\u015bniach czworog\u0142owych.<\/p>\n<p><strong>Czy masz innych cz\u0142onk\u00f3w rodziny cierpi\u0105cych na LGMD?<\/strong><\/p>\n<p>Nie, jestem jedyn\u0105 osob\u0105 w mojej rodzinie z LGMD2A\/R1.<\/p>\n<p><strong>Co uwa\u017casz za najwi\u0119ksze wyzwanie w \u017cyciu z LGMD?<\/strong>?<\/p>\n<p>Schody powstrzymuj\u0105 mnie przed wieloma rzeczami.  Nadal mog\u0119 pokonywa\u0107 schody, ale wymaga to tyle wysi\u0142ku i energii.  To nie jest tego warte.  Musz\u0119 r\u00f3wnie\u017c nauczy\u0107 si\u0119 dostosowywa\u0107 swoje codzienne \u017cycie, takie jak posiadanie krzes\u0142a do siedzenia i odpoczynku podczas gotowania, siadanie na pod\u0142odze, aby trzyma\u0107 dzieci zamiast podnoszenia ich i ograniczanie liczby rzeczy, kt\u00f3re robi\u0119 w ci\u0105gu dnia.  Najwi\u0119ksz\u0105 przeszkod\u0105, jakiej do\u015bwiadczy\u0142em, jest mentalny garb dotycz\u0105cy mojego krzes\u0142a elektrycznego.  Wiem, \u017ce musz\u0119 z niego korzysta\u0107, ale istnieje mentalna bariera, kt\u00f3ra jeszcze nie zaakceptowa\u0142a mojej diagnozy.<\/p>\n<p><strong>Jakie jest Twoje najwi\u0119ksze OSI\u0104GNI\u0118CIE?<\/strong><\/p>\n<p>Moje relacje i pozytywne nastawienie do \u017cycia.  Uko\u0144czy\u0142em szko\u0142\u0119 \u015bredni\u0105, ale potem mia\u0142em problemy z diagnoz\u0105, wi\u0119c nie dosta\u0142em si\u0119 jeszcze na studia, ale jest to m\u00f3j cel.<\/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>Da\u0142o mi to mo\u017cliwo\u015b\u0107 bycia bardziej samo\u015bwiadomym i samokszta\u0142cenia.  Jestem teraz bardziej w kontakcie ze swoim cia\u0142em, potrafi\u0119 powiedzie\u0107, czy jestem w stanie rabdomiolizy, czy jestem w trakcie pracy, czy po prostu musz\u0119 odpocz\u0105\u0107.  Ze wzgl\u0119du na brak bada\u0144 nad LGMD, wiele zale\u017cy od samokszta\u0142cenia i wsparcia.  Mieszkam w p\u00f3\u0142wiejskiej spo\u0142eczno\u015bci, wi\u0119c \u017caden lekarz nie mia\u0142 poj\u0119cia, co mog\u0119 zrobi\u0107 i co mi dolega.  Teraz mog\u0119 zadzwoni\u0107 do mojego PCP, powiedzie\u0107 mu, co si\u0119 dzieje, a on odpowiednio mnie potraktuje.<\/p>\n<p><strong>Co chcia\u0142by\u015b, aby \u015bwiat dowiedzia\u0142 si\u0119 o LGMD?<\/strong>?<\/p>\n<p>LGMD nie u ka\u017cdego wygl\u0105da tak samo.  Nie wszyscy b\u0119d\u0105 porusza\u0107 si\u0119 samodzielnie i nie wszyscy b\u0119d\u0105 je\u017adzi\u0107 na w\u00f3zku inwalidzkim.  Tak samo jak nie wszyscy otrzymali wczesn\u0105 diagnoz\u0119, a niekt\u00f3rzy nigdy jej nie otrzymali (cho\u0107 teraz jest to \u0142atwiejsze).  Nie ka\u017cdy dobrze przyjmie diagnoz\u0119 i pewnie p\u00f3jdzie naprz\u00f3d, a nie ka\u017cdy wpadnie w spiral\u0119 z powodu diagnozy.  Nigdy nie zak\u0142adaj, \u017ce wiesz, przez co kto\u015b przechodzi fizycznie i psychicznie.<\/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>Pierwsz\u0105 rzecz\u0105, kt\u00f3r\u0105 chcia\u0142bym zrobi\u0107, to pojecha\u0107 na pe\u0142ne przyg\u00f3d wakacje \/ wycieczk\u0119.  Nie jest to teraz dla mnie praktyczne, ale zawsze chc\u0119 pojecha\u0107 do Wielkiego Kanionu, Yosemite, najwy\u017cszego punktu Appalach\u00f3w i wulkan\u00f3w na Hawajach.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5545,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,82,16],"class_list":["post-5544","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-lgmd2a-calpainopathy","tag-united-states"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>INDIVIDUAL WITH LGMD: Jade - 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\/2021\/10\/17\/individual-with-lgmd-jade\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Jade - 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