{"id":5635,"date":"2022-02-08T04:21:00","date_gmt":"2022-02-08T04:21:00","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5635"},"modified":"2024-02-09T14:23:56","modified_gmt":"2024-02-09T14:23:56","slug":"individual-with-lgmd-john","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2022\/02\/08\/individual-with-lgmd-john\/","title":{"rendered":"OSOBA Z LGMD: John"},"content":{"rendered":"

\"<\/p>\n

Nazwa<\/strong>: John\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 Wiek<\/strong>28 lat<\/p>\n

Kraj<\/strong>: Stany Zjednoczone<\/p>\n

Podtyp LGMD<\/strong>: LGMD 2J\/R10 zwi\u0105zane z titin\u0105<\/p>\n

 <\/p>\n

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

W wieku 10 lat zdiagnozowano u mnie zesp\u00f3\u0142 Beckera. Oko\u0142o 11 lub 12 roku \u017cycia zdiagnozowano u mnie miopati\u0119 mitochondrialn\u0105. W 2016 roku zdiagnozowano u mnie LGMD, a w 2021 roku ostatecznie potwierdzono genetycznie LGMD2J\/R10.<\/p>\n

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

Mia\u0142em problemy z prawid\u0142owym chodzeniem w wieku oko\u0142o 5 lat. Podczas \u0107wicze\u0144 odczuwa\u0142em ogromny b\u00f3l \u0142ydek i mia\u0142em trudno\u015bci z dotrzymaniem kroku innym dzieciom.<\/p>\n

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

M\u00f3j brat r\u00f3wnie\u017c ma LGMD2J.<\/p>\n

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

Najwi\u0119kszym wyzwaniem jest utrata zdolno\u015bci do robienia rzeczy, kt\u00f3re kocham, a tak\u017ce konieczno\u015b\u0107 wielokrotnego znajdowania nowych hobby z powodu post\u0119puj\u0105cego os\u0142abienia. Trudno sobie z tym poradzi\u0107. Teraz odkrywam r\u00f3wnie\u017c, \u017ce codzienne czynno\u015bci s\u0105 trudne lub niemo\u017cliwe do wykonania bez pomocy mojej niesamowitej \u017cony, Christiny. Niestety, ze wzgl\u0119du na charakter mojej niepe\u0142nosprawno\u015bci i urz\u0105dzenie mobilne, z kt\u00f3rego korzystam, cz\u0119sto jestem dyskryminowany i odmawia mi si\u0119 dost\u0119pu do niekt\u00f3rych miejsc publicznych.<\/p>\n

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

Po\u015blubienie mojej pi\u0119knej \u017cony Christiny i uko\u0144czenie studi\u00f3w licencjackich z chemii.<\/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

Choroba naprawd\u0119 ukszta\u0142towa\u0142a to, kim jestem dzisiaj, stawiaj\u0105c przede mn\u0105 wyzwania, pozwalaj\u0105c mi pozna\u0107 innych cz\u0142onk\u00f3w spo\u0142eczno\u015bci os\u00f3b niepe\u0142nosprawnych i popychaj\u0105c mnie do bycia rzecznikiem, kt\u00f3rym jestem dzisiaj. Ograniczone mo\u017cliwo\u015bci fizyczne sprawi\u0142y, \u017ce jestem bardziej kreatywny w rozwi\u0105zywaniu problem\u00f3w i nauczy\u0142y mnie cierpliwo\u015bci. Choroba naprawd\u0119 sprawia wra\u017cenie, \u017ce czasami mnie pokonuje, ale wa\u017cne jest dla mnie, aby pami\u0119ta\u0107, \u017ce nie jestem sam w walce o prawdziwe leczenie schorze\u0144 takich jak moje.<\/p>\n

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

Chcia\u0142abym, aby istnia\u0142a szersza \u015bwiadomo\u015b\u0107 wp\u0142ywu, jaki choroba taka jak LGMD mo\u017ce mie\u0107 na czyje\u015b \u017cycie, zdrowie psychiczne i oczekiwania \u017cyciowe. Chcia\u0142bym, aby inni zdawali sobie spraw\u0119 z powagi post\u0119pu choroby, ale tak\u017ce z tego, \u017ce wszyscy musimy w pewnym momencie przy\u0142\u0105czy\u0107 si\u0119 do walki z chorobami przewlek\u0142ymi i rzadkimi.<\/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

Bez dw\u00f3ch zda\u0144, wskoczy\u0142bym na dirt bike i je\u017adzi\u0142 ca\u0142ymi dniami! Du\u017co je\u017adzi\u0142em, gdy by\u0142em m\u0142odszy, ale nie jestem ju\u017c wystarczaj\u0105co silny. Nadal my\u015bl\u0119 o tym ka\u017cdego dnia.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5636,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,66],"tags":[78],"class_list":["post-5635","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2j","tag-lgmd2j-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: John - 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\/2022\/02\/08\/individual-with-lgmd-john\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: John - 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