{"id":3276,"date":"2020-06-16T14:26:06","date_gmt":"2020-06-16T19:26:06","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=3276"},"modified":"2024-02-09T14:24:37","modified_gmt":"2024-02-09T14:24:37","slug":"ibrahim","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2020\/06\/16\/ibrahim\/","title":{"rendered":"OSOBA Z LGMD: \u0130brahim"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

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

Nazwa<\/strong>: \u0130brahim                                 Wiek<\/strong>: 55 lat<\/p>\n\n\n\n

Kraj<\/strong>: Turcja  <\/p>\n\n\n\n

Podtyp LGMD<\/strong>: LGMD 2B\/R2 zwi\u0105zane z dysferlin\u0105<\/p>\n\n\n\n

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

Zdiagnozowano mnie w wieku 25 lat.<\/p>\n\n\n\n

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

Na pocz\u0105tku odczuwa\u0142em zm\u0119czenie przy powtarzaj\u0105cych si\u0119 ruchach. Os\u0142abienie zacz\u0119\u0142o si\u0119 w kostkach. Bardziej dotyczy\u0142o to lewej stopy.<\/strong><\/p>\n\n\n\n

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

Nie, nikt w mojej rodzinie nie ma takiej samej diagnozy.<\/p>\n\n\n\n

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

Na pocz\u0105tku odczuwa\u0142em lekkie zm\u0119czenie. Poniewa\u017c by\u0142em nauczycielem, d\u0142ugie okresy stania wydawa\u0142y si\u0119 negatywnie wp\u0142ywa\u0107 na moj\u0105 wydajno\u015b\u0107 w pracy. Zacz\u0105\u0142em chodzi\u0107 z jedn\u0105 lask\u0105, ale mia\u0142em trudno\u015bci z chodzeniem do pracy. Zacz\u0105\u0142em korzysta\u0107 z krzese\u0142.<\/p>\n\n\n\n

Poniewa\u017c jest to powoli post\u0119puj\u0105ca choroba mi\u0119\u015bni, mia\u0142em trudno\u015bci z wyt\u0142umaczeniem si\u0119 osobom wok\u00f3\u0142 mnie.<\/strong><\/p>\n\n\n\n

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

Po odej\u015bciu z zawodu nauczyciela pomy\u015bla\u0142em, \u017ce powinienem wp\u0142yn\u0105\u0107 na \u017cycie innych. Najpierw pracowa\u0142em dla T\u00fcrkiye Kas Hastal\u0131klar\u0131 Derne\u011fi (Turkey Muscle Disorders Organization - jak MDA). P\u00f3\u017aniej pracowa\u0142em r\u00f3wnie\u017c dla HASGAP (Sie\u0107 Wolontariuszy Pacjent\u00f3w). Nadal dobrowolnie pracuj\u0119 dla Izmir-Turkey Muscle Diseases Branch. Od czas\u00f3w szko\u0142y \u015bredniej pasjonuj\u0119 si\u0119 poezj\u0105 i pisaniem. Napisa\u0142em dwie ksi\u0105\u017cki poetyckie (Moon Blue Nights i Shore-Free Sea).<\/p>\n\n\n\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\n\n\n

\u017bycie z LGMD pozwoli\u0142o mi nosi\u0107 \u015bmier\u0107 w kieszeni, dzi\u0119ki czemu mog\u0119 czerpa\u0107 z \u017cycia wi\u0119cej. Sprawi\u0142o, \u017ce sta\u0142o si\u0119 ono bardziej produktywne. Sprawi\u0142o, \u017ce \u017cycie sta\u0142o si\u0119 bardziej dotykalne.<\/p>\n\n\n\n

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

Jedynym sposobem, aby \u015bwiat pozna\u0142 nasz \u015bwiat, jest wprowadzenie zmian. Nie mo\u017cemy m\u00f3wi\u0107 o zmianie jako\u015bci naszego \u017cycia, je\u015bli nie marzymy, nie produkujemy i nie dzielimy si\u0119 tym, co produkujemy. Wi\u0119kszo\u015b\u0107 z nas walczy z chorobami. Je\u015bli nie ma w tym marze\u0144 i wysi\u0142ku, nie mo\u017cemy niczego zmieni\u0107. Mentalno\u015b\u0107, kt\u00f3ra nie marzy i nie produkuje, nie mo\u017ce tego zrozumie\u0107.<\/p>\n\n\n\n

Chc\u0119, aby wiedzieli, \u017ce nasze serce i m\u00f3zg pracuj\u0105.<\/p>\n\n\n\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\n\n\n

Wprowadzi\u0142bym zmiany w mojej wyobra\u017ani. Biega\u0142bym mi\u0119dzy galaktykami i bawi\u0142 si\u0119 w parkach dzieci\u0119cych galaktyk. 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 pod adresem: http:\/\/lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSPOTLIGHT INTERVIEW\u201d  Name:  \u0130brahim                                 Age:  55 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":3277,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[],"class_list":["post-3276","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: \u0130brahim - 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=\"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2020\/06\/16\/ibrahim\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: \u0130brahim - 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