{"id":1112,"date":"2016-01-18T11:30:03","date_gmt":"2016-01-18T17:30:03","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1112"},"modified":"2016-01-18T11:30:03","modified_gmt":"2016-01-18T17:30:03","slug":"laurence","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2016\/01\/18\/laurence\/","title":{"rendered":"OSOBA Z LGMD: Laurence"},"content":{"rendered":"

\"WYWIAD Z LGMD SPOTLIGHT\" <\/strong>– 01\/18\/2016<\/em><\/p>\n

Nazwa<\/strong>: Laurence \u00a0\u00a0\u00a0Wiek<\/strong>: 49\"LGMD2A<\/a><\/p>\n

Kraj<\/strong>: Francja<\/p>\n

Podtyp LGMD<\/strong>: LGMD2A \/ kalpainopatia<\/p>\n

 <\/p>\n

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

Zdiagnozowano mnie w wieku 42 lat.<\/p>\n

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

Objawy, kt\u00f3rych do\u015bwiadczy\u0142em, obejmowa\u0142y: du\u017ce zm\u0119czenie, trudno\u015bci z wchodzeniem po schodach, upadki podczas chodzenia po nier\u00f3wnym pod\u0142o\u017cu i trudno\u015bci z podnoszeniem si\u0119 z pozycji siedz\u0105cej.<\/p>\n

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

Nie, jestem jedynym cz\u0142onkiem rodziny z LGMD2A..<\/strong><\/p>\n

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

Ewolucja jest raczej powolna, ale musz\u0119 by\u0107 do\u015b\u0107 ostro\u017cny, aby prowadzi\u0107 regularne \u017cycie, w przeciwnym razie jest gorzej, a ewolucja jest wtedy szybsza, gdy jestem zm\u0119czony, a atrofia jest silniejsza. Trudno pogodzi\u0107 to z zaj\u0119ciami prywatnymi lub zawodowymi.<\/p>\n

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

Staram si\u0119 pracowa\u0107, co jest wa\u017cne, aby nie my\u015ble\u0107 zbyt wiele o chorobie i i\u015b\u0107 dalej.<\/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

Walcz\u0105c z b\u00f3lem i trudno\u015bciami fizycznymi, choroba uczy mnie, jak ustala\u0107 priorytety, ale tak\u017ce by\u0107 \u015bwiadomym, \u017ce zawsze istniej\u0105\u00a0 <\/strong>ludzi, kt\u00f3rzy s\u0105 bardziej chorzy ni\u017c ty, wi\u0119c musisz by\u0107 optymist\u0105.<\/p>\n

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

Chc\u0119, aby \u015bwiat dowiedzia\u0142 si\u0119, \u017ce LGMD jest cz\u0119\u015bci\u0105 chor\u00f3b sierocych, dlatego trudno jest zebra\u0107 fundusze niezb\u0119dne do znalezienia skutecznego leczenia. Wa\u017cne jest, aby rozmawia\u0107 o LGMD wok\u00f3\u0142 nas, ale przede wszystkim ze spo\u0142eczno\u015bci\u0105 medyczn\u0105 i lekarzami pierwszego kontaktu, kt\u00f3rzy mog\u0105 pom\u00f3c swoim pacjentom uda\u0107 si\u0119 do odpowiednich o\u015brodk\u00f3w medycznych. Mam bardzo osobisty przyk\u0142ad, aby zilustrowa\u0107 ten punkt - przed zdiagnozowaniem m\u00f3j lekarz rodzinny powiedzia\u0142 mi, \u017ce moje objawy by\u0142y spowodowane za\u0142amaniem nerwowym!!!<\/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 chodzi\u0107 naturalnie bez laski i zwiedzi\u0107 ca\u0142y \u015bwiat, m\u00f3c wyjecha\u0107 za granic\u0119 z rodzin\u0105, czuj\u0105c si\u0119 wolnym!<\/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":"

\u201cLGMD SPOTLIGHT INTERVIEW\u201d – 01\/18\/2016 Name:\u00a0 Laurence \u00a0\u00a0\u00a0Age: 49 Country: […]<\/p>","protected":false},"author":1,"featured_media":1114,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,18,15],"class_list":["post-1112","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-france","tag-lgmd2a"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Laurence - 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=\"http:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2016\/01\/18\/laurence\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Laurence - 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