{"id":999,"date":"2015-08-27T15:25:15","date_gmt":"2015-08-27T20:25:15","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=999"},"modified":"2015-08-27T15:25:15","modified_gmt":"2015-08-27T20:25:15","slug":"sabrina","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2015\/08\/27\/sabrina\/","title":{"rendered":"OSOBA Z LGMD: Sabrina"},"content":{"rendered":"<p>08\/27\/2015<\/p>\n<p><strong>Nazwa<\/strong><strong>:    Sa<\/strong>brina \u00a0\u00a0\u00a0\u00a0\u00a0<strong>WIEK:<\/strong> 32<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2015\/08\/LGMD2D-Sabrina.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1001 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\/2015\/08\/LGMD2D-Sabrina-300x169.png\" alt=\"LGMD2D - Sabrina\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>KRAJ:\u00a0 <\/strong>Bangladesz<\/p>\n<p><strong>Podtyp LGMD:<\/strong> \u00a0LGMD 2D<\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>W jakim wieku zosta\u0142e\u015b zdiagnozowany? <\/strong>:<\/p>\n<p>W wieku 9 lat postawiono mi diagnoz\u0119.<\/p>\n<p><strong>Jakie by\u0142y pierwsze objawy? <\/strong>:<\/p>\n<p>Cz\u0119sto upada\u0142em i mia\u0142em trudno\u015bci z wchodzeniem po schodach i bieganiem.<\/p>\n<p><strong>Czy masz innych cz\u0142onk\u00f3w rodziny cierpi\u0105cych na LGMD?<\/strong><\/p>\n<p>Tak! Moja m\u0142odsza siostra r\u00f3wnie\u017c ma LGMD.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>Co uwa\u017casz za najwi\u0119ksze wyzwanie w \u017cyciu z LGMD?<\/strong>:<\/p>\n<p>\u017byj\u0105c z LGMD pierwszymi wyzwaniami by\u0142y dla mnie bariery spo\u0142eczne i infrastrukturalne. Na przyk\u0142ad z powodu<\/p>\n<p>Z powodu niedost\u0119pno\u015bci w naszym kraju nie mog\u0142em uko\u0144czy\u0107 studi\u00f3w. Nie mog\u0142em chodzi\u0107 na wesela, zjazdy rodzinne, urodziny ani nic w tym rodzaju. Od dzieci\u0144stwa ogranicza\u0142em wi\u0119c kontakty towarzyskie z innymi. Dorasta\u0142em g\u0142\u00f3wnie w czterech \u015bcianach mojego domu.<\/p>\n<p>Co wi\u0119cej, moje wyzwania fizyczne polegaj\u0105 na tym, \u017ce nie jestem w stanie nic zrobi\u0107 samodzielnie. Nie jestem w stanie poruszy\u0107 \u017cadn\u0105 cz\u0119\u015bci\u0105 cia\u0142a, z wyj\u0105tkiem palc\u00f3w u r\u0105k, n\u00f3g i g\u0142owy. Potrzebuj\u0119 pomocy praktycznie we wszystkim, wi\u0119c musz\u0119 w pe\u0142ni polega\u0107 na kim\u015b innym. Dni mija\u0142y, a teraz m\u00f3j stan fizyczny sta\u0142 si\u0119 jeszcze bardziej krytyczny. Obecnie najwi\u0119kszym wyzwaniem jest dla mnie problem z oddychaniem, pomimo kt\u00f3rego chc\u0119 i\u015b\u0107 naprz\u00f3d z pe\u0142n\u0105 pasj\u0105.<\/p>\n<p><strong>Jakie jest twoje najwi\u0119ksze osi\u0105gni\u0119cie? <\/strong>:<\/p>\n<p>Moje \u017cycie zmieni\u0142o si\u0119 z dnia na dzie\u0144, gdy pewnego dnia dowiedzia\u0142em si\u0119, \u017ce moja kochaj\u0105ca najm\u0142odsza siostra cierpi na t\u0119 sam\u0105 chorob\u0119. Mog\u0142em wyobrazi\u0107 sobie dla niej t\u0119 sam\u0105 bolesn\u0105 przysz\u0142o\u015b\u0107, kt\u00f3rej do\u015bwiadcza\u0142em - to sprawi\u0142o, \u017ce si\u0119 zbuntowa\u0142em. Reszta \u015bwiata nie pokazuje tego samego obrazu - sk\u0105d ta sytuacja dyskryminacji w naszym kraju? Dlaczego musz\u0105 s\u0142ysze\u0107 \"nie\" na samym pocz\u0105tku \u017cycia? Nawet po byciu cz\u0119\u015bci\u0105 tego spo\u0142ecze\u0144stwa zacz\u0119li si\u0119 dystansowa\u0107. Wszystkie te pytania k\u0142\u0119bi\u0142y mi si\u0119 w g\u0142owie i by\u0142em sfrustrowany. W lutym 2008 roku napisa\u0142em list do premiera mojego kraju.<\/p>\n<p>W kwietniu 2009 roku otrzyma\u0142em mo\u017cliwo\u015b\u0107 skontaktowania si\u0119 ze \u015bwiatem za po\u015brednictwem Internetu i Facebooka, kt\u00f3ry jest \u0142atwym sposobem na zebranie ludzi. Z inspiracji znajomego z Facebooka stara\u0142em si\u0119 dotrze\u0107 z listem do jak najwi\u0119kszej liczby os\u00f3b i u\u015bwiadomi\u0107 im prawa os\u00f3b niepe\u0142nosprawnych poprzez rzecznictwo. Tak rozpocz\u0119\u0142a si\u0119 podr\u00f3\u017c Bangladesh Society for the Change and Advocacy Nexus (B-SCAN), organizacji wolontariackiej za\u0142o\u017conej 17 lipca 2009 r. w celu zapewnienia osobom niepe\u0142nosprawnym lepszego \u017cycia poprzez tworzenie sieci poprzez rzecznictwo na rzecz zmiany systemu w Bangladeszu. Zacz\u0105\u0142em r\u00f3wnie\u017c pisa\u0107 na blogach w celu podnoszenia \u015bwiadomo\u015bci. W 2011 roku zosta\u0142em nominowany w mi\u0119dzynarodowym konkursie blogerskim niemieckiego nadawcy Deutsche Welle i zaj\u0105\u0142em drugie miejsce na \u015bwiecie.<\/p>\n<p>B-SCAN jako ca\u0142o\u015b\u0107 otrzyma\u0142 ogromny odzew, wielu pokaza\u0142o swoj\u0105 trosk\u0119. Nasze \u017cycie wewn\u0105trz muru uleg\u0142o zmianie. Zacz\u0119li\u015bmy marzy\u0107 o kampaniach na rzecz praw i \u015bwiadomo\u015bci os\u00f3b niepe\u0142nosprawnych w ca\u0142ym kraju, kt\u00f3re pewnego dnia sprawi\u0105, \u017ce ludzie b\u0119d\u0105 \u015bwiadomi i zaniepokojeni, a tym samym pomog\u0105 osobom niepe\u0142nosprawnym uzyska\u0107 ich prawa.<\/p>\n<p>Ka\u017cdego ranka, kiedy wstaj\u0119, pierwszym widokiem, kt\u00f3ry przyci\u0105ga m\u00f3j wzrok, jest otwarte, b\u0142\u0119kitne niebo. Czuj\u0119, \u017ce ta ziemia jest naprawd\u0119 pi\u0119kna, \u017cycie jest pi\u0119kne. Chcia\u0142bym dotkn\u0105\u0107 nieba. Chcia\u0142bym stan\u0105\u0107 pod go\u0142ym niebem i wzi\u0105\u0107 g\u0142\u0119boki oddech. Nigdy nie my\u015bla\u0142em, \u017ce kiedykolwiek b\u0119d\u0119 w stanie to zrobi\u0107, tylko marzy\u0142em i pragn\u0105\u0142em. To \u017cyczenie, ta si\u0142a woli dawa\u0142a mi si\u0142\u0119, inspirowa\u0142a mnie do dobrego \u017cycia. I tylko ta si\u0142a woli sprawi\u0142a, \u017ce marzy\u0142em o B-SCAN, kt\u00f3ry uwa\u017cam za najwi\u0119kszy sukces mojego \u017cycia. B-SCAN jest motywacj\u0105, kt\u00f3ra wynios\u0142a mnie pod otwarte niebo.<\/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><strong>: <\/strong><\/p>\n<p>Kiedy zdiagnozowano u mnie LGMD, nigdy nie uwa\u017ca\u0142em tego za problem ani nic w tym rodzaju. Moje \u017cycie zmieni\u0142o si\u0119, gdy to samo sta\u0142o si\u0119 z moj\u0105 siostr\u0105. Kiedy zobaczy\u0142am, \u017ce ona przechodzi przez to samo, zobaczy\u0142am zupe\u0142nie nowy obraz, zupe\u0142nie now\u0105 perspektyw\u0119. Zacz\u0105\u0142em my\u015ble\u0107 o wszystkich \"Sabrinas\" w tym kraju, o ich przetrwaniu, b\u00f3lu i nieszcz\u0119\u015bciu. Wszystkie te my\u015bli zrodzi\u0142y we mnie now\u0105 Sabrin\u0119. Jako osoba sta\u0142am si\u0119 silniejsza.<\/p>\n<p>Chcia\u0142bym zmieni\u0107 perspektyw\u0119 ludzi i uczyni\u0107 j\u0105 odpowiednim miejscem dla os\u00f3b niepe\u0142nosprawnych, ustanawiaj\u0105c ich prawa.<\/p>\n<p><strong>Co chcia\u0142by\u015b, aby \u015bwiat dowiedzia\u0142 si\u0119 o LGMD? <\/strong>:<\/p>\n<p>\u017bycie z LGMD nie jest ko\u0144cem \u017cycia. Ka\u017cdy powinien dowiadywa\u0107 si\u0119 o niej coraz wi\u0119cej. Mo\u017cna to zrobi\u0107 poprzez studiowanie ka\u017cdej powi\u0105zanej strony internetowej. Ka\u017cdy powinien nadal \u017cy\u0107 swobodnie i szcz\u0119\u015bliwie jak dawniej, a nawet wi\u0119cej. Staraj si\u0119 cieszy\u0107 ka\u017cd\u0105 chwil\u0105 \u017cycia. Nie ma znaczenia, czy nadal nie ma leczenia. Frustracja tylko sprawia, \u017ce \u017cycie staje si\u0119 ci\u0119\u017carem. \u017bycie jest naprawd\u0119 pi\u0119kne. Je\u015bli istnieje problem, musi istnie\u0107 rozwi\u0105zanie. Musimy tylko go poszuka\u0107. Zawsze b\u0105d\u017a pozytywnie nastawiony.<\/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>Moje szcz\u0119\u015bcie nie b\u0119dzie mia\u0142o granic, poniewa\u017c po raz pierwszy od zawsze b\u0119d\u0119 m\u00f3g\u0142 wybiec z domu przy pierwszej kropli deszczu. Co wi\u0119cej, je\u015bli zostan\u0119 wyleczony, poinformuj\u0119 wszystkich o leczeniu, aby mogli zosta\u0107 wyleczeni w taki sam spos\u00f3b jak ja.<\/p>","protected":false},"excerpt":{"rendered":"<p>08\/27\/2015 Name:\u00a0\u00a0\u00a0 Sabrina \u00a0\u00a0\u00a0\u00a0\u00a0AGE: 32 COUNTRY:\u00a0 Bangladesh LGMD Sub-Type: \u00a0LGMD [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1001,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,28],"tags":[52,29],"class_list":["post-999","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2d","tag-bangladesh","tag-lgmd2d"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>LGMD Spotlight Interview - Sabrina<\/title>\n<meta name=\"description\" content=\"Sabrina, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares her experience in living with this progressive neuro-muscular disease.\" \/>\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\/2015\/08\/27\/sabrina\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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