{"id":2098,"date":"2018-07-13T09:14:39","date_gmt":"2018-07-13T14:14:39","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2098"},"modified":"2018-07-13T09:14:39","modified_gmt":"2018-07-13T14:14:39","slug":"individual-with-lgmd-majed","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2018\/07\/13\/individual-with-lgmd-majed\/","title":{"rendered":"OSOBA Z LGMD: Majed"},"content":{"rendered":"<p><strong>LGMD \"WYWIAD W \u015aWIETLE REFLEKTOR\u00d3W\"<\/strong><\/p>\n<p><strong>Nazwa<\/strong>: Majed\u00a0 \u00a0<strong>Wiek<\/strong>:\u00a0 20\u00a0\u00a0<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2018\/07\/LGMD2C-Majed-1.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-2099 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\/2018\/07\/LGMD2C-Majed-1-300x169.png\" alt=\"\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>Kraj<\/strong>:  Syria \/ Niemcy<\/p>\n<p><strong>Podtyp LGMD<\/strong>:  LGMD2C<\/p>\n<p>&nbsp;<\/p>\n<p><strong>W JAKIM WIEKU ZOSTA\u0141E\u015a ZDIAGNOZOWANY?<\/strong>:<\/p>\n<p>Zdiagnozowano mnie w wieku 8 lat.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>JAKIE BY\u0141Y PIERWSZE OBJAWY<\/strong>:<\/p>\n<p>Objawy zacz\u0119\u0142y si\u0119 pojawia\u0107, gdy mia\u0142em 7 lat.  Jako ma\u0142e dziecko chodzi\u0142em na palcach.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>\u00a0CZY MASZ INNYCH CZ\u0141ONK\u00d3W RODZINY, KT\u00d3RZY CHORUJ\u0104 NA LGMD?<\/strong>:<\/p>\n<p>Tak, u mojego brata i dw\u00f3ch moich wujk\u00f3w (braci mojej matki) r\u00f3wnie\u017c zdiagnozowano LGMD2C. (M\u00f3j brat nadal mieszka w Syrii i ma na imi\u0119 Younis. Zosta\u0142 on wcze\u015bniej przedstawiony w wywiadzie LGMD Spotlight).<\/p>\n<p>&nbsp;<\/p>\n<p><strong>CO UWA\u017bASZ ZA NAJWI\u0118KSZE WYZWANIE W \u017bYCIU Z LGMD?<\/strong>:<\/p>\n<p>Najwi\u0119kszym wyzwaniem jest dla mnie chodzenie i stanie przez d\u0142ugi czas. Mog\u0119 przej\u015b\u0107 500 metr\u00f3w, u\u017cywaj\u0105c laski.   U\u017cywam r\u00f3wnie\u017c w\u00f3zka inwalidzkiego i w \u0142azience s\u0105 pewne trudno\u015bci.  Czasami wykonuj\u0119 niekt\u00f3re codzienne czynno\u015bci samodzielnie.<\/p>\n<p>Teraz mieszkam w Niemczech z moim wujkiem i nie widzia\u0142em moich rodzic\u00f3w i braci od dw\u00f3ch lat.  My\u015bl\u0119, \u017ce ci\u0119\u017cko jest \u017cy\u0107 samotnie... z dala od rodziny, braci i kraju.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>JAKIE JEST TWOJE NAJWI\u0118KSZE OSI\u0104GNI\u0118CIE?<\/strong>:<\/p>\n<p>Prawda jest taka, \u017ce nie wiem, co jest dla mnie najwi\u0119kszym osi\u0105gni\u0119ciem.   Ale jestem dumny, \u017ce wci\u0105\u017c mog\u0119 chodzi\u0107 i \u0107wiczy\u0107.<\/p>\n<p>Pomimo warunk\u00f3w wojny i przesiedle\u0144 w Syrii, uda\u0142o mi si\u0119 pomy\u015blnie uko\u0144czy\u0107 szko\u0142\u0119 \u015bredni\u0105, a 10 lat temu nauczy\u0142em si\u0119 p\u0142ywa\u0107.<\/p>\n<p>Ale najwi\u0119kszym wyzwaniem, jakie podj\u0105\u0142em, jest podr\u00f3\u017c z Syrii do Niemiec przez 9 kraj\u00f3w.  W ci\u0105gu 10 dni nie jestem w stanie opisa\u0107 trudno\u015bci, jakie napotka\u0142em na drodze. W lesie w Serbii przejecha\u0142em 5 kilometr\u00f3w i nie mia\u0142em wtedy w\u00f3zka inwalidzkiego, z wyj\u0105tkiem zatoni\u0119cia naszej \u0142odzi przed greckimi wyspami, nie wiem, jak prze\u017cy\u0142em utoni\u0119cie.<\/p>\n<p>Teraz ucz\u0119 si\u0119 j\u0119zyka niemieckiego, a kiedy sko\u0144cz\u0119, uko\u0144cz\u0119 studia uniwersyteckie.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>JAK CHOROBA ALZHEIMERA WP\u0141YN\u0118\u0141A NA TO, \u017bE STA\u0141E\u015a SI\u0118 OSOB\u0104, KT\u00d3R\u0104 JESTE\u015a DZISIAJ?<\/strong>:<\/p>\n<p>LGMD nauczy\u0142o mnie by\u0107 cierpliwym i \u017cyczliwym cz\u0142owiekiem.  Cz\u0142owiek mo\u017ce robi\u0107, co chce, niezale\u017cnie od okoliczno\u015bci.  Jest to trudne, ale nauczy\u0142o mnie r\u00f3wnie\u017c wykazywa\u0107 wol\u0119 i determinacj\u0119.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>CO CHCIA\u0141BY\u015a, ABY \u015aWIAT DOWIEDZIA\u0141 SI\u0118 O LGMD?<\/strong>:<\/p>\n<p>Chc\u0119, aby \u015bwiat dowiedzia\u0142 si\u0119 wi\u0119cej o tej chorobie i r\u00f3\u017cnych typach LGMD. Ponadto chc\u0119, aby ludzie wiedzieli, \u017ce wi\u0119cej bada\u0144 koncentruj\u0105cych si\u0119 na LGMD ma kluczowe znaczenie dla znalezienia lekarstwa i leczenia tych chor\u00f3b. Mam nadziej\u0119, \u017ce naukowcy znajd\u0105 lekarstwo na t\u0119 chorob\u0119. Chc\u0119 r\u00f3wnie\u017c, aby ludzie podj\u0119li kroki w celu zapobiegania tej chorobie.<\/p>\n<p>&nbsp;<\/p>\n<p><strong>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>:<\/p>\n<p>Pierwsz\u0105 rzecz\u0105, jak\u0105 zrobi\u0119, b\u0119dzie p\u00f3j\u015bcie na basen i skok z du\u017cej wysoko\u015bci.  Do tego szybkie bieganie i gra w pi\u0142k\u0119 no\u017cn\u0105 z moim bratem, Younisem.<\/p>\n<p>&nbsp;<\/p>\n<p>* * * Aby przeczyta\u0107 wi\u0119cej wywiad\u00f3w \"LGMD Spotlight Interviews\" lub zg\u0142osi\u0107 si\u0119 na ochotnika do udzia\u0142u w nadchodz\u0105cym wywiadzie, odwied\u017a nasz\u0105 stron\u0119 internetow\u0105 pod adresem <a href=\"https:\/\/www.lgmd-info.org\/pl\/spotlight-interviews\/\">https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><u>\u00a0 <\/u><\/p>\n<p>* * * Prosimy o LIKE, COMMENT i SHARE tego postu, aby pom\u00f3c zwi\u0119kszy\u0107 \u015bwiadomo\u015b\u0107 na temat LGMD!<\/p>","protected":false},"excerpt":{"rendered":"<p>LGMD \u201cSPOTLIGHT INTERVIEW\u201d Name: Majed\u00a0 \u00a0Age:\u00a0 20\u00a0\u00a0 Country: \u00a0Syria \/ [&hellip;]<\/p>","protected":false},"author":1,"featured_media":2099,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,75],"tags":[98],"class_list":["post-2098","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2c","tag-lgmd2c-syria-germany"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - 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