{"id":412,"date":"2015-01-06T21:59:11","date_gmt":"2015-01-07T03:59:11","guid":{"rendered":"http:\/\/mainstay-bg.com\/wp\/?p=138"},"modified":"2015-01-06T21:59:11","modified_gmt":"2015-01-07T03:59:11","slug":"138","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2015\/01\/06\/138\/","title":{"rendered":"OSOBA Z LGMD: Martijn"},"content":{"rendered":"

01\/06\/2015:<\/p>\n

NAZWA:<\/strong> Martijn\u00a0\"LGMD2A<\/a>\u00a0\u00a0\u00a0 <\/span><\/p>\n

WIEK:<\/strong> 23
\n<\/span><\/p>\n

KRAJ:<\/strong> Holandia
\n<\/span><\/p>\n

Podtyp LGMD<\/strong>: LGMD 2A \/ kalpainopatia
\n<\/span><\/p>\n

W JAKIM WIEKU ZOSTA\u0141E\u015a ZDIAGNOZOWANY?<\/strong>\u00a0 Mniej wi\u0119cej w okolicach moich 15 urodzin.<\/span><\/span><\/p>\n

JAKIE BY\u0141Y PIERWSZE OBJAWY:<\/strong>
\nPierwsze symptomy by\u0142y widoczne od dziecka. Pe\u0142za\u0142em jak krab i by\u0142em fizycznie \"inny\" od moich r\u00f3wie\u015bnik\u00f3w. Uprawia\u0142em wiele r\u00f3\u017cnych sport\u00f3w, takich jak gimnastyka, siatk\u00f3wka, judo i tenis. Ale moje wyniki spada\u0142y z powodu post\u0119puj\u0105cego os\u0142abienia mi\u0119\u015bni w moim ciele.<\/p>\n

CZY MASZ INNYCH CZ\u0141ONK\u00d3W RODZINY, KT\u00d3RZY CHORUJ\u0104 NA LGMD? \u00a0 <\/strong>Nie.<\/p>\n

CO JEST DLA CIEBIE NAJWI\u0118KSZYM WYZWANIEM W \u017bYCIU Z LGMD?<\/strong>
\nBardziej praktyczne problemy s\u0105 dla mnie gorsze. Na przyk\u0142ad samodzielne chodzenie po ulicy z krzywymi p\u0142ytkami chodnikowymi jest sporym wyzwaniem. Wymaga du\u017co uwagi i m\u0119czy mnie to. W wi\u0119kszo\u015bci przypadk\u00f3w decyduj\u0119 si\u0119 na korzystanie z w\u00f3zka inwalidzkiego, je\u015bli musz\u0119 przej\u015b\u0107 d\u0142u\u017cszy dystans. Ponadto wyja\u015bnianie nieznajomym mojej choroby mi\u0119\u015bni nie jest moim ulubionym hobby. Nie jestem pewien, ile informacji powinienem przekaza\u0107. Niekt\u00f3rzy z nich pytaj\u0105 o \"ca\u0142y proces\" i bardziej osobiste rzeczy. Inni boj\u0105 si\u0119 pyta\u0107 o jakiekolwiek szczeg\u00f3\u0142y. M\u00f3wienie o mojej chorobie nie jest dla mnie problemem, ale ustalenie, ile informacji powinienem przekaza\u0107, jest wyzwaniem.<\/p>\n

JAKIE JEST TWOJE NAJWI\u0118KSZE OSI\u0104GNI\u0118CIE?<\/strong>
\nMasz kilka sekund? Jednym z moich najwi\u0119kszych osi\u0105gni\u0119\u0107 s\u0105 skoki spadochronowe, studiowanie i robienie wszystkiego, co zdrowi ludzie uwa\u017caj\u0105 za \"niemo\u017cliwe\" dla os\u00f3b niepe\u0142nosprawnych. Lubi\u0119 przekracza\u0107 granice w moim \u017cyciu. Zawsze szukam przyg\u00f3d, takich jak podr\u00f3\u017ce z przyjaci\u00f3\u0142mi (aktualnie zaplanowali\u015bmy wycieczk\u0119 na Islandi\u0119 w lutym 2015 roku) i tak dalej. Poza tym moim osobistym osi\u0105gni\u0119ciem jest prezentacja na temat mojej choroby mi\u0119\u015bni i sposobu, w jaki sobie z ni\u0105 radz\u0119, dla oko\u0142o 500 student\u00f3w medycyny.<\/p>\n

JAK CHOROBA ALZHEIMERA WP\u0141YN\u0118\u0141A NA TO, \u017bE STA\u0141E\u015a SI\u0118 OSOB\u0104, KT\u00d3R\u0104 JESTE\u015a DZISIAJ:<\/strong>
\nLGMD z pewno\u015bci\u0105 wp\u0142yn\u0119\u0142o na moje \u017cycie! Sprawi\u0142a, \u017ce sta\u0142em si\u0119 bardziej dojrza\u0142y pod wieloma wzgl\u0119dami. Spos\u00f3b, w jaki radz\u0119 sobie z problemami i ciesz\u0119 si\u0119 \u017cyciem, znacznie si\u0119 zmieni\u0142 od czasu postawienia diagnozy.<\/p>\n

CO \u015aWIAT POWINIEN WIEDZIE\u0106 O LGMD?<\/strong>
\nOsoby z LGMD lub jak\u0105kolwiek inn\u0105 chorob\u0105 mi\u0119\u015bni nie r\u00f3\u017cni\u0105 si\u0119 od os\u00f3b zdrowych, po prostu czasami mog\u0105 potrzebowa\u0107 niewielkiej pomocy. Nie nale\u017cy r\u00f3wnie\u017c rozmawia\u0107 z osob\u0105 stoj\u0105c\u0105 za w\u00f3zkiem inwalidzkim, ale zwraca\u0107 si\u0119 bezpo\u015brednio do osoby na w\u00f3zku.<\/p>\n

GDYBY JUTRO MO\u017bNA BY\u0141O \"WYLECZY\u0106\" CHOROB\u0118 ALZHEIMERA, CO BY\u0141OBY PIERWSZ\u0104 RZECZ\u0104, KT\u00d3R\u0104 CHCIA\u0141BY\u015a ZROBI\u0106:<\/strong>
\nChcia\u0142abym nurkowa\u0107 solo!<\/p>","protected":false},"excerpt":{"rendered":"

01\/06\/2015: NAME: Martijn\u00a0\u00a0\u00a0\u00a0 AGE: 23 COUNTRY: The Netherlands LGMD Sub-Type: […]<\/p>","protected":false},"author":1,"featured_media":146,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[12,15,17],"class_list":["post-412","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-calpainopathy","tag-lgmd2a","tag-netherlands"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Martijn<\/title>\n<meta name=\"description\" content=\"Martijn, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares his 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\/01\/06\/138\/\" \/>\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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