{"id":1378,"date":"2016-10-11T11:29:46","date_gmt":"2016-10-11T16:29:46","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1378"},"modified":"2016-10-11T11:29:46","modified_gmt":"2016-10-11T16:29:46","slug":"anna","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2016\/10\/11\/anna\/","title":{"rendered":"OSOBA Z LGMD: Anna"},"content":{"rendered":"

WYWIAD Z LGMD SPOTLIGHT<\/strong><\/p>\n

Nazwa<\/strong>: Anna \u00a0\u00a0Wiek<\/strong>: 36 lat\"lgmd2i-anna\"<\/a><\/p>\n

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

Podtyp LGMD<\/strong>: LGMD2I<\/p>\n

 <\/p>\n

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

Pocz\u0105tkowo zdiagnozowano u mnie \"niespecyficzn\u0105 miopati\u0119 mi\u0119\u015bniow\u0105, gdy by\u0142em ma\u0142ym dzieckiem (gdzie\u015b w szkole podstawowej). W p\u00f3\u017aniejszym okresie \u017cycia, gdy mia\u0142em 26 lat, otrzyma\u0142em \"robocz\u0105 diagnoz\u0119\" LGMD. Wreszcie, w wieku 36 lat, formalnie \/ klinicznie zdiagnozowano u mnie LGMD 2I za pomoc\u0105 test\u00f3w genetycznych.<\/p>\n

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

Nie jestem do ko\u0144ca pewien, jakie by\u0142y moje pierwsze objawy, poniewa\u017c chocia\u017c mia\u0142em t\u0119 chorob\u0119 od urodzenia, moi rodzice nigdy ze mn\u0105 o tym nie rozmawiali. Uwa\u017cali, \u017ce skoro moje objawy nie mia\u0142y medycznego wp\u0142ywu na moje \u017cycie, to nie ma potrzeby si\u0119 nad nimi rozwodzi\u0107. Patrz\u0105c wstecz - gdybym mia\u0142 zgadywa\u0107 - moimi najwcze\u015bniejszymi objawami (kt\u00f3re pami\u0119tam) by\u0142o chodzenie na palcach i obola\u0142e \u0142ydki. Pami\u0119tam r\u00f3wnie\u017c, \u017ce nie mog\u0142em \u0142atwo uczestniczy\u0107 w niekt\u00f3rych zaj\u0119ciach na si\u0142owni, takich jak biegi prze\u0142ajowe i gimnastyka.<\/p>\n

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

Mam trzech braci. Co ciekawe, dwaj najbli\u017csi mi wiekiem bracia cierpi\u0105 na LGMD, ale m\u00f3j najm\u0142odszy brat (kt\u00f3ry jest siedem lat m\u0142odszy) nie jest w og\u00f3le dotkni\u0119ty t\u0105 chorob\u0105 i w rzeczywisto\u015bci jest niezwykle wysportowany.<\/p>\n

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

Dla mnie najwi\u0119kszym wyzwaniem s\u0105 ci\u0105gle zmieniaj\u0105ce si\u0119 potrzeby zwi\u0105zane z t\u0105 chorob\u0105 - czasami trudno za nimi nad\u0105\u017cy\u0107! Na przyk\u0142ad, przyzwyczajasz si\u0119 do wykonywania pewnego zadania w jeden spos\u00f3b i nagle, pewnego dnia, nie mo\u017cesz ju\u017c tego robi\u0107 w ten spos\u00f3b (lub mo\u017cesz odkry\u0107, \u017ce nie mo\u017cesz ju\u017c wykonywa\u0107 tego zadania w og\u00f3le). Ponadto kupujesz sprz\u0119t, kt\u00f3ry ma ci pom\u00f3c i dzia\u0142a on przez jaki\u015b czas, ale potem docierasz do miejsca, w kt\u00f3rym nie jest ju\u017c pomocny i musisz albo kupi\u0107 kolejny sprz\u0119t, albo wymy\u015bli\u0107 co\u015b innego.<\/p>\n

Drugim najwi\u0119kszym wyzwaniem zwi\u0105zanym z LGMD jest dla mnie brak wiedzy na temat tego, jak ta choroba wp\u0142ynie na nasz\u0105 przysz\u0142o\u015b\u0107. U ka\u017cdego choroba post\u0119puje inaczej, w r\u00f3\u017cnym stopniu i tempie, wi\u0119c trudno jest przewidzie\u0107, jakie b\u0119d\u0105 przysz\u0142e potrzeby lub zaplanowa\u0107 jak\u0105kolwiek przysz\u0142o\u015b\u0107, poniewa\u017c fizycznie po prostu nie wiesz, w jakiej b\u0119dziesz formie.<\/p>\n

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

Bardzo ci\u0119\u017cko pracuj\u0119, aby \u017cy\u0107 pe\u0142ni\u0105 \u017cycia, wi\u0119c trudno mi wymieni\u0107 jedno osi\u0105gni\u0119cie. Czasami \u017cyj\u0105c z chorob\u0105, samo wstanie z \u0142\u00f3\u017cka wydaje si\u0119 by\u0107 moim najwi\u0119kszym osi\u0105gni\u0119ciem J Z ca\u0142\u0105 powag\u0105 jednak, jestem matk\u0105 dw\u00f3jki dzieci (jednego biologicznego i jednego adoptowanego), wi\u0119c obserwowanie, jak rosn\u0105, daje mi ogromn\u0105 rado\u015b\u0107 i daje mi ogromne poczucie spe\u0142nienia. By\u0142am r\u00f3wnie\u017c proboszczem przez prawie dziesi\u0119\u0107 lat, wi\u0119c mia\u0142am wielki zaszczyt towarzyszy\u0107 ludziom w ich najtrudniejszych chwilach. \u015awiadomo\u015b\u0107, \u017ce pomog\u0142em im przej\u015b\u0107 przez ten trudny okres (nawet je\u015bli w niewielkim stopniu) daje mi poczucie dumy.<\/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

Choroba LGMD wp\u0142yn\u0119\u0142a na moje \u017cycie na wiele sposob\u00f3w. Nauczy\u0142a mnie przystosowywa\u0107 si\u0119 do otoczenia. My\u015bl\u0119, \u017ce \u017cycie z t\u0105 chorob\u0105 w naturalny spos\u00f3b uczy nieszablonowego my\u015blenia.<\/p>\n

Nauczy\u0142o mnie r\u00f3wnie\u017c, by nie rozpami\u0119tywa\u0107 tego, co si\u0119 sta\u0142o, poniewa\u017c gdy si\u0119 rozpami\u0119tuje, to czuje si\u0119, \u017ce si\u0119 \"utkn\u0119\u0142o\", co nie jest ani pomocne, ani zdrowe. LGMD da\u0142o mi r\u00f3wnie\u017c dar doceniania wszystkich ma\u0142ych rzeczy w \u017cyciu. Co najwa\u017cniejsze, LGMD pozwoli\u0142o mi nie traktowa\u0107 siebie tak powa\u017cnie. Moja najm\u0142odsza c\u00f3rka regularnie powtarza mi, \u017ce jestem \"g\u0142upiutka\" i dobrze mi z tym - \u017cycie jest zbyt kr\u00f3tkie i zbyt niepewne, by si\u0119 nie zatrzyma\u0107 i nie po\u015bmia\u0107. Jednym z moich \u017cyciowych mott jest: \"Je\u015bli plan 'A' nie zadzia\u0142a, jest jeszcze dwadzie\u015bcia pi\u0119\u0107 liter w alfabecie!\". J<\/p>\n

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

Choroba ta wp\u0142ywa na ka\u017cdego inaczej, a nawet na t\u0119 sam\u0105 osob\u0119 w r\u00f3\u017cny spos\u00f3b w zale\u017cno\u015bci od dnia i otoczenia. Oznacza to, \u017ce czasami osoba cierpi\u0105ca na stwardnienie rozsiane mo\u017ce odczuwa\u0107 du\u017cy niepok\u00f3j. Czasami pozornie proste i przyziemne zadanie dla osoby sprawnej mo\u017ce wydawa\u0107 si\u0119 przyt\u0142aczaj\u0105ce dla osoby cierpi\u0105cej na stwardnienie rozsiane z powodu zwi\u0105zanego z tym procesu i\/lub barier fizycznych. Wszystko, co mog\u0119 powiedzie\u0107 \u015bwiatu, przyjacio\u0142om, rodzinie i opiekunom, to to, \u017ce wa\u017cne jest, aby kocha\u0107 i wspiera\u0107 osoby ze stwardnieniem rozsianym nie tylko fizycznie, ale tak\u017ce emocjonalnie i psychicznie - nawet je\u015bli mo\u017cesz nie do ko\u0144ca rozumie\u0107, co czuj\u0105 i dlaczego.<\/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

Gdybym obudzi\u0142 si\u0119 dzisiaj i nie mia\u0142 \u017cadnych objaw\u00f3w, bez w\u0105tpienia uda\u0142bym si\u0119 bezpo\u015brednio na pla\u017c\u0119!<\/p>\n

 <\/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":"

LGMD SPOTLIGHT INTERVIEW Name:\u00a0 Anna \u00a0\u00a0Age: \u00a0\u00a036 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":1376,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[38,36],"class_list":["post-1378","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i","tag-canada","tag-lgmd2i"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Anna - 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\/10\/11\/anna\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Anna - 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