{"id":1282,"date":"2016-07-26T15:59:21","date_gmt":"2016-07-26T20:59:21","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1282"},"modified":"2016-07-26T15:59:21","modified_gmt":"2016-07-26T20:59:21","slug":"maram","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2016\/07\/26\/maram\/","title":{"rendered":"OSOBA Z LGMD: Maram"},"content":{"rendered":"

07\/26\/2016 –\u00a0<\/strong>LGMD \"Wywiad w centrum uwagi\"<\/p>\n

NAZWA<\/strong>: Maram\u00a0\u00a0\u00a0 WIEK<\/strong>26 lat\"LGMD2E<\/a><\/p>\n

KRAJ<\/strong>: Palestyna<\/p>\n

Podtyp LGMD<\/strong>: LGMD2E<\/p>\n

 <\/p>\n

W jakim wieku zosta\u0142e\u015b zdiagnozowany?<\/strong>:<\/p>\n

Dystrofi\u0119 mi\u0119\u015bniow\u0105 zdiagnozowano u mnie w wieku 10 lat. Kiedy mia\u0142em 26 lat, otrzyma\u0142em genetyczne potwierdzenie diagnozy LGMD2E.<\/p>\n

Jakie by\u0142y pierwsze objawy?<\/strong>:<\/p>\n

Kiedy mia\u0142em 3 lata, moi rodzice zauwa\u017cyli, \u017ce m\u00f3j ch\u00f3d jest chwiejny i trudno mi wsta\u0107 z ziemi.<\/p>\n

Czy masz innych cz\u0142onk\u00f3w rodziny cierpi\u0105cych na LGMD?<\/strong><\/p>\n

Nie, jestem jedyn\u0105 osob\u0105 w mojej rodzinie.<\/p>\n

Co uwa\u017casz za najwi\u0119ksze wyzwanie w \u017cyciu z LGMD?<\/strong>:<\/p>\n

Jest tak wiele wyzwa\u0144. Proste rzeczy dla wielu ludzi s\u0105 moimi najwi\u0119kszymi wyzwaniami, ale p\u00f3j\u015bcie do \u0142azienki i zmiana pozycji z boku na bok podczas snu sprawiaj\u0105, \u017ce czuj\u0119 si\u0119 tak s\u0142abo.<\/p>\n

Jakie jest twoje najwi\u0119ksze osi\u0105gni\u0119cie?<\/strong>:<\/p>\n

W moim kraju ludzie nie wiedz\u0105 nic o LGMD. Ka\u017cdego dnia staram si\u0119 zwi\u0119ksza\u0107 \u015bwiadomo\u015b\u0107 choroby za po\u015brednictwem medi\u00f3w spo\u0142eczno\u015bciowych. Pomog\u0142em wielu pacjentom w moim kraju i w \u015bwiecie arabskim w przeprowadzeniu testu genetycznego w celu potwierdzenia diagnozy i uzyskania sprz\u0119tu, kt\u00f3rego potrzebujemy, aby u\u0142atwi\u0107 nam \u017cycie. Skontaktowa\u0142em si\u0119 r\u00f3wnie\u017c z moimi pacjentami z ca\u0142ego \u015bwiata i stali\u015bmy si\u0119 bliskimi przyjaci\u00f3\u0142mi. Oni s\u0105 moim najwi\u0119kszym osi\u0105gni\u0119ciem.<\/p>\n

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

My\u015bl\u0119, \u017ce uczyni\u0142o mnie to silniejszym w taki czy inny spos\u00f3b. Sta\u0142em si\u0119 bardziej opieku\u0144czy dla ludzi wok\u00f3\u0142 mnie. Doceniam ka\u017cde ma\u0142e b\u0142ogos\u0142awie\u0144stwo w moim \u017cyciu, w tym moj\u0105 wspania\u0142\u0105 rodzin\u0119. Sta\u0142em si\u0119 bli\u017cszy Bogu. My\u015bl\u0119, \u017ce zmieni\u0142o mnie to w dobry spos\u00f3b i podoba mi si\u0119 to, kim jestem dzisiaj.<\/p>\n

Co chcia\u0142by\u015b, aby \u015bwiat dowiedzia\u0142 si\u0119 o LGMD?<\/strong>:<\/p>\n

Chc\u0119, \u017ceby wiedzieli, \u017ce nie r\u00f3\u017cnimy si\u0119 tak bardzo od normalnych ludzi. Co si\u0119 sta\u0142o, \u017ce prosty b\u0142\u0105d genetyczny lub mutacja spowodowa\u0142y, \u017ce mam trudno\u015bci z poruszaniem si\u0119, podczas gdy oni mog\u0105. Przyczyna nie jest tak skomplikowana i je\u015bli j\u0105 zrozumiemy, b\u0119dziemy w stanie znale\u017a\u0107 odpowiednie leczenie.<\/p>\n

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

Chcia\u0142bym przytuli\u0107 moich rodzic\u00f3w tak mocno i nigdy ich nie puszcza\u0107. Ci\u0105gle my\u015bl\u0119 o tym, jak ci\u0119\u017ckie by\u0142oby \u017cycie bez nich.<\/p>\n

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: https:\/\/www.lgmd-info.org\/spotlight-interviews.<\/p>","protected":false},"excerpt":{"rendered":"

07\/26\/2016 –\u00a0LGMD “Spotlight Interview” NAME:\u00a0 Maram\u00a0\u00a0\u00a0 AGE: 26 years old […]<\/p>","protected":false},"author":1,"featured_media":1281,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,62],"tags":[63],"class_list":["post-1282","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2e","tag-lgmd2e-palestine"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Maram - 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\/2016\/07\/26\/maram\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Maram - 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