{"id":5561,"date":"2021-11-07T23:51:06","date_gmt":"2021-11-07T23:51:06","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5561"},"modified":"2024-02-09T14:23:59","modified_gmt":"2024-02-09T14:23:59","slug":"individual-with-lgmd-osman","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2021\/11\/07\/individual-with-lgmd-osman\/","title":{"rendered":"OSOBA Z LGMD: Osman"},"content":{"rendered":"

\"\"<\/p>\n

LGMD \"WYWIAD W \u015aWIETLE REFLEKTOR\u00d3W\"<\/p>\n

Imi\u0119 i nazwisko:<\/strong>\u00a0 Osman<\/p>\n

Wiek<\/strong>: 30 lat<\/p>\n

Kraj:<\/strong>\u00a0 Turcja<\/p>\n

Podtyp LGMD:<\/strong>\u00a0 LGMD2D\/R3 Zwi\u0105zane z alfa-sarkoglikanem<\/p>\n

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

Zdiagnozowano mnie w wieku 16 lat.<\/p>\n

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

Objawy zacz\u0119\u0142y si\u0119 pojawia\u0107 oko\u0142o siedemnastego roku \u017cycia. Czu\u0142em potrzeb\u0119 odpoczynku po biegu. By\u0142em zm\u0119czony podczas wchodzenia po schodach. Po kilku latach zacz\u0105\u0142em przytrzymywa\u0107 si\u0119 podczas wchodzenia po schodach lub wstawania z pozycji siedz\u0105cej. W wieku 25 lat zacz\u0105\u0142em nie by\u0107 w stanie pochyla\u0107 si\u0119 do przodu i zacz\u0105\u0142em chodzi\u0107 powoli, aby nie upa\u015b\u0107.<\/p>\n

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

Tak, u mojej siostry r\u00f3wnie\u017c zdiagnozowano LGMD2D\/R3.<\/p>\n

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

Najwi\u0119ksze wyzwania dotycz\u0105 codziennych czynno\u015bci. Nie jestem w stanie chodzi\u0107 z rodzin\u0105 tam, gdzie chc\u0119 i wchodzi\u0107 po schodach bez trzymania si\u0119 czego\u015b.<\/p>\n

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

Moim najwi\u0119kszym osi\u0105gni\u0119ciem by\u0142o zostanie in\u017cynierem komputerowym i pomoc w za\u0142o\u017ceniu stowarzyszenia LGMD Turkey<\/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

Sta\u0142em si\u0119 osob\u0105 o wysokiej \u015bwiadomo\u015bci. Staram si\u0119 pomaga\u0107 innym ludziom w ka\u017cdej sytuacji, najlepiej jak potrafi\u0119. Staram si\u0119 informowa\u0107 innych ludzi o mojej chorobie i innych chorobach.<\/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 wszystkiego o LGMD - objawach, wyzwaniach, leczeniu, rehabilitacji, najnowszych badaniach naukowych i organizacji dzia\u0142aj\u0105cej na rzecz podnoszenia \u015bwiadomo\u015bci, a tak\u017ce zapewnienia ulgi osobom i rodzinom dotkni\u0119tym t\u0105 post\u0119puj\u0105c\u0105 chorob\u0105 nerwowo-mi\u0119\u015bniow\u0105.<\/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

Je\u015bli zostan\u0119 wyleczony, chc\u0119 biega\u0107 bez przerwy i wchodzi\u0107 po schodach w miejscach, kt\u00f3rych wcze\u015bniej si\u0119 obawia\u0142em.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5560,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,28],"tags":[108],"class_list":["post-5561","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2d","tag-lgmd2d-turkey"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Osman - 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\" 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