{"id":5519,"date":"2021-09-20T00:30:58","date_gmt":"2021-09-20T00:30:58","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5519"},"modified":"2024-02-09T14:24:00","modified_gmt":"2024-02-09T14:24:00","slug":"individual-with-lgmd-sanjana","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2021\/09\/20\/individual-with-lgmd-sanjana\/","title":{"rendered":"OSOBA Z LGMD: Sanjana"},"content":{"rendered":"

\"<\/p>\n

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

Nazwa<\/strong>: Sanjana<\/p>\n

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

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

Podtyp LGMD<\/strong>: LGMD2A\/R1 Kalpaina 3 - powi\u0105zane<\/p>\n

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

Zdiagnozowano mnie w wieku 13 lat.<\/p>\n

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

Objawy zacz\u0119\u0142y si\u0119 pojawia\u0107 oko\u0142o pi\u0105tego roku \u017cycia. Chodzi\u0142em na palcach podczas wchodzenia po schodach lub chodzenia pod g\u00f3r\u0119. Potrzebowa\u0142em podparcia kolan podczas wstawania z pozycji siedz\u0105cej. Balansowa\u0142em na palcach, siedz\u0105c w kucki.<\/p>\n

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

Tak, u moich dw\u00f3ch starszych braci r\u00f3wnie\u017c zdiagnozowano LGMD2A\/R1.<\/p>\n

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

Najwi\u0119ksze wyzwania wi\u0105\u017c\u0105 si\u0119 z codziennymi czynno\u015bciami. I niemo\u017cno\u015b\u0107 s\u0142u\u017cenia moim rodzicom, kt\u00f3rzy starzej\u0105 si\u0119 ka\u017cdego dnia.<\/p>\n

Jakie jest Twoje najwi\u0119ksze OSI\u0104GNI\u0118CIE?<\/strong><\/p>\n

Moim najwi\u0119kszym osi\u0105gni\u0119ciem by\u0142o za\u0142o\u017cenie organizacji zajmuj\u0105cej si\u0119 dystrofi\u0105 mi\u0119\u015bniow\u0105 - Indian Association of Muscular Dystrophy. www.iamd.in<\/a> Obecnie tworzy centrum rehabilitacji dla wszystkich form dystrofii mi\u0119\u015bniowej.<\/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

To, kim jestem dzisiaj, zawdzi\u0119czam w\u0142a\u015bnie LGMD. Przez 27 lat prowadzi\u0142am odnosz\u0105cy sukcesy butik z odzie\u017c\u0105 damsk\u0105, jednocze\u015bnie zak\u0142adaj\u0105c organizacj\u0119 zajmuj\u0105c\u0105 si\u0119 dystrofi\u0105 mi\u0119\u015bniow\u0105.<\/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 zapewni\u0107 to samo ka\u017cdej osobie zdiagnozowanej na tym \u015bwiecie.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5520,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[],"class_list":["post-5519","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Sanjana - 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\/2021\/09\/20\/individual-with-lgmd-sanjana\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Sanjana - 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