{"id":3178,"date":"2020-01-12T12:52:48","date_gmt":"2020-01-12T18:52:48","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3178"},"modified":"2020-01-12T12:52:48","modified_gmt":"2020-01-12T18:52:48","slug":"natasha","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2020\/01\/12\/natasha\/","title":{"rendered":"INDYWIDUALNA OSOBA Z LGMD: Natasha"},"content":{"rendered":"<figure class=\"wp-block-image size-large\"><img decoding=\"async\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%271024%27%20height%3D%27576%27%20viewBox%3D%270%200%201024%20576%27%3E%3Crect%20width%3D%271024%27%20height%3D%27576%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2020\/01\/LGMD1D-Natasha-1024x576.png\" alt=\"\" class=\"lazyload wp-image-3179\"\/><\/figure>\n\n\n\n<h3 class=\"wp-block-heading\">LGMD \"WYWIAD W \u015aWIETLE REFLEKTOR\u00d3W\"<\/h3>\n\n\n\n<p><strong>Nazwa<\/strong>:  Natasza&nbsp;\n<strong>Wiek<\/strong>:\n25 lat<\/p>\n\n\n\n<p><strong>Kraj<\/strong>: Stany Zjednoczone<\/p>\n\n\n\n<p><strong>Podtyp LGMD<\/strong>:   LGMD D1 zwi\u0105zany z DNAJB6 (dawniej LGMD typ\n1D)<\/p>\n\n\n\n<p><strong>W jakim wieku zosta\u0142e\u015b zdiagnozowany?<\/strong>:<\/p>\n\n\n\n<p>Zdiagnozowano mnie w wieku 23 lat.<\/p>\n\n\n\n<p><strong>Jakie by\u0142y pierwsze objawy?<\/strong>:<\/p>\n\n\n\n<p>Nasz podtyp ma p\u00f3\u017any pocz\u0105tek, wi\u0119c obecnie nie mam \u017cadnych objaw\u00f3w, chocia\u017c w okresie dorastania by\u0142y ma\u0142e rzeczy, kt\u00f3re maj\u0105 wi\u0119kszy sens teraz, gdy wiem o mojej diagnozie.  Dorastaj\u0105c, nie mog\u0142am biega\u0107 tak szybko, jak moi r\u00f3wie\u015bnicy i mia\u0142am problemy z podnoszeniem si\u0119 z ziemi bez u\u017cycia r\u0105k, na przyk\u0142ad w ta\u0144cu.<\/p>\n\n\n\n<p><strong>Czy masz innych cz\u0142onk\u00f3w rodziny cierpi\u0105cych na LGMD?<\/strong><\/p>\n\n\n\n<p>Tak, m\u00f3j tata, wujek (ze strony ojca) i dziadek ze strony ojca maj\u0105 t\u0119 sam\u0105 diagnoz\u0119.\ndziadek maj\u0105 t\u0119 sam\u0105 diagnoz\u0119.<\/p>\n\n\n\n<p><strong>Co uwa\u017casz za najwi\u0119ksze wyzwanie\nw \u017cyciu z LGMD<\/strong>:<\/p>\n\n\n\n<p>Najwi\u0119kszym wyzwaniem by\u0142a dla mnie \u015bwiadomo\u015b\u0107, \u017ce pewnego dnia\nmoja mobilno\u015b\u0107 b\u0119dzie mniejsza ni\u017c teraz i \u017ce mog\u0119 nie by\u0107 w stanie kontynuowa\u0107\nprowadzi\u0107 aktywnego trybu \u017cycia, kt\u00f3ry obecnie lubi\u0119.<\/p>\n\n\n\n<p><strong>Jakie jest twoje najwi\u0119ksze osi\u0105gni\u0119cie?<\/strong>:<\/p>\n\n\n\n<p>Nie jestem pewien, co jest moim najwi\u0119kszym osi\u0105gni\u0119ciem... Musia\u0142bym powiedzie\u0107, \u017ce wi\u0119zi rodzinne i przyjacielskie, kt\u00f3re utrzyma\u0142em.  Plus spo\u0142eczno\u015b\u0107, kt\u00f3r\u0105 mamy i budujemy dla dominuj\u0105cych form LGMD poprzez Fundacj\u0119 LGMD-1D DNAJB6, kt\u00f3ra jest publiczn\u0105 fundacj\u0105 non-profit, kt\u00f3rej misj\u0105 jest utrzymanie centralnej lokalizacji dla os\u00f3b, u kt\u00f3rych zdiagnozowano dystrofi\u0119 mi\u0119\u015bniow\u0105 obr\u0119czy ko\u0144czyny typu 1D (LGMD1D), aby spotyka\u0107 si\u0119, konsolidowa\u0107 istotne wiadomo\u015bci i rozpoczyna\u0107 zbi\u00f3rki pieni\u0119dzy w celu przyspieszenia bada\u0144.&nbsp; <a href=\"https:\/\/lgmd1d.org\">https:\/\/lgmd1d.org<\/a> &nbsp;Utworzyli\u015bmy r\u00f3wnie\u017c Rejestr Pacjent\u00f3w dla wszystkich pacjent\u00f3w, u kt\u00f3rych zdiagnozowano autosomaln\u0105 dominuj\u0105c\u0105 posta\u0107 LGMD.&nbsp; <\/p>\n\n\n\n<p><strong>W jaki spos\u00f3b LGMD wp\u0142yn\u0119\u0142o na to, \u017ce sta\u0142e\u015b si\u0119\nosob\u0105, kt\u00f3r\u0105 jeste\u015b dzisiaj:<\/strong><\/p>\n\n\n\n<p>Zawsze my\u015bl\u0119 o przysz\u0142o\u015bci, o tym, jak moje dzia\u0142ania teraz\nteraz wp\u0142yn\u0105 na moje cia\u0142o, ludzi, kt\u00f3rych kocham i rodzin\u0119, kt\u00f3r\u0105 mam nadziej\u0119 wychowa\u0107.  To sprawi\u0142o, \u017ce obudzi\u0142em w sobie cierpliwo\u015b\u0107 i spr\u00f3bowa\u0142em\nprowadzi\u0107 mniej intensywny fizycznie styl \u017cycia.<\/p>\n\n\n\n<p><strong>Co chcia\u0142by\u015b, aby \u015bwiat dowiedzia\u0142 si\u0119 o LGMD?<\/strong>:<\/p>\n\n\n\n<p>Musimy kontynuowa\u0107\nrozpowszechnia\u0107 informacje i \u0142\u0105czy\u0107 si\u0119 w spos\u00f3b, kt\u00f3ry pomo\u017ce w wyleczeniu.  Na przyk\u0142ad, autosomalny dominuj\u0105cy rejestr pacjent\u00f3w z LGMD\n(LGMD typu 1) b\u0119dzie mia\u0142 kluczowe znaczenie dla bada\u0144 i znalezienia lekarstwa.<\/p>\n\n\n\n<p><strong>Gdyby jutro mo\u017cna by\u0142o \"wyleczy\u0107\" chorob\u0119 LGMD, co\nby\u0142oby pierwsz\u0105 rzecz\u0105, kt\u00f3r\u0105 chcia\u0142by\u015b zrobi\u0107<\/strong>:<\/p>\n\n\n\n<p>Gdybym jutro zosta\u0142 wyleczony, poszed\u0142bym ta\u0144czy\u0107, \u017ceby to uczci\u0107!!! <\/p>\n\n\n\n<hr class=\"wp-block-separator\"\/>\n\n\n\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: <a href=\"https:\/\/www.lgmd-info.org\/pl\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD &#8220;SPOTLIGHT INTERVIEW&#8221; Name:&nbsp; Natasha&nbsp; Age: 25 years old Country: [&hellip;]<\/p>","protected":false},"author":1,"featured_media":3179,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,102,104],"tags":[],"class_list":["post-3178","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd-d1-dnajb6-related","category-lgmd1d"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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