{"id":1341,"date":"2016-09-29T12:26:02","date_gmt":"2016-09-29T17:26:02","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1341"},"modified":"2016-09-29T12:26:02","modified_gmt":"2016-09-29T17:26:02","slug":"michele","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2016\/09\/29\/michele\/","title":{"rendered":"OSOBA Z LGMD: Michele"},"content":{"rendered":"

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

 <\/p>\n

NAZWISKO: Michele \u00a0\u00a0WIEK<\/strong>: 52 Yrs. Wiek\"lgmd2a-michele-w\"<\/a><\/p>\n

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

Podtyp LGMD<\/strong>: LGMD2A - kalpainopatia<\/p>\n

\u00a0<\/strong><\/p>\n

W JAKIM WIEKU ZOSTA\u0141E\u015a ZDIAGNOZOWANY?<\/strong>:<\/p>\n

Pocz\u0105tkowo zdiagnozowano u mnie nieokre\u015blon\u0105 posta\u0107 dystrofii mi\u0119\u015bniowej w wieku 25 lat. Diagnoz\u0119 LGMD2A otrzyma\u0142em w wieku 43 lat.<\/p>\n

JAKIE BY\u0141Y PIERWSZE OBJAWY:<\/strong><\/p>\n

W p\u00f3\u017anych latach nastoletnich nabawi\u0142em si\u0119 niezgrabnego chodu, a na pocz\u0105tku lat 20. zacz\u0105\u0142em kule\u0107.<\/p>\n

CZY MASZ INNYCH CZ\u0141ONK\u00d3W RODZINY, KT\u00d3RZY CHORUJ\u0104 NA LGMD? <\/strong><\/p>\n

Tak, jedno z rodze\u0144stwa ma LGMD2A, ale drugie nie.<\/p>\n

CO UWA\u017bASZ ZA NAJWI\u0118KSZE WYZWANIE W \u017bYCIU Z LGMD?<\/strong>:<\/p>\n

M\u00f3wi\u0105c wprost, najgorsze jest radzenie sobie z publicznymi toaletami, poniewa\u017c przesiadanie si\u0119 na w\u00f3zek inwalidzki jest fizycznie trudne, a toalety nie zawsze s\u0105 odpowiednio ustawione, wi\u0119c zawsze martwi\u0119 si\u0119 o picie wody lub kawy, gdy jestem poza domem. Czasami mam wra\u017cenie, \u017ce moje \u017cycie kr\u0119ci si\u0119 wok\u00f3\u0142 zarz\u0105dzania p\u0142ynami!<\/p>\n

JAKIE JEST TWOJE NAJWI\u0118KSZE OSI\u0104GNI\u0118CIE?<\/strong>:<\/p>\n

Zawodowo moim najwi\u0119kszym osi\u0105gni\u0119ciem jest zaanga\u017cowanie w tworzenie i zarz\u0105dzanie Coalition to Cure Calpain 3 (C3), kt\u00f3ra jest grup\u0105 non-profit skupiaj\u0105c\u0105 si\u0119 na finansowaniu bada\u0144 o wysokim potencjale w celu wyleczenia LGMD2A (znanej r\u00f3wnie\u017c jako kalpainopatia) i edukacji globalnej spo\u0142eczno\u015bci na temat tej choroby.<\/p>\n

Osobi\u015bcie moim ostatnim osi\u0105gni\u0119ciem jest rozwi\u0105zanie mini krzy\u017c\u00f3wki New York Timesa w 15 sekund,
\nJAK 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

Z drugiej strony, uczyni\u0142o mnie to bardziej empatycznym i da\u0142o mi mo\u017cliwo\u015b\u0107 pokazania moim dzieciom, \u017ce wa\u017cne jest, aby podejmowa\u0107 dzia\u0142ania, gdy jeste\u015b sfrustrowany stanem rzeczy. Nie narzekaj; b\u0105d\u017a agentem zmian.<\/p>\n

Z drugiej strony, zmusi\u0142o mnie to do dostosowania mojego codziennego \u017cycia, poniewa\u017c moja mobilno\u015b\u0107 si\u0119 pogorszy\u0142a i chocia\u017c z pewno\u015bci\u0105 w pe\u0142ni wykorzystuj\u0119 swoje \u017cycie i jestem og\u00f3lnie szcz\u0119\u015bliwy i produktywny, to z pewno\u015bci\u0105 stanowi to wyzwanie, kt\u00f3re mo\u017ce by\u0107 m\u0119cz\u0105ce fizycznie i emocjonalnie.<\/p>\n

CO CHCIA\u0141BY\u015a, ABY \u015aWIAT DOWIEDZIA\u0141 SI\u0118 O LGMD?<\/strong>:<\/p>\n

Potrzebujemy wi\u0119cej funduszy na badania i wi\u0119cej naukowc\u00f3w zaanga\u017cowanych w znalezienie terapii lub lekarstwa.<\/p>\n

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

Je\u017adzi\u0107 na rowerze (najlepiej r\u00f3\u017cowym Schwinn z koszykiem na kierownicy i termosem kawy) na pla\u017c\u0119 i spacerowa\u0107 wzd\u0142u\u017c molo z rodzin\u0105.<\/p>\n

 <\/p>\n

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: https:\/\/www.lgmd-info.org\/spotlight-interviews.<\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSPOTLIGHT INTERVIEW\u201d   NAME:\u00a0 Michele \u00a0\u00a0AGE: 52 Yrs. Old […]<\/p>","protected":false},"author":1,"featured_media":1340,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[15,16],"class_list":["post-1341","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a","tag-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Michele - 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\/2016\/09\/29\/michele\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Michele - LGMD Awareness Foundation\" \/>\n<meta property=\"og:description\" content=\"LGMD \u201cSPOTLIGHT INTERVIEW\u201d   NAME:\u00a0 Michele \u00a0\u00a0AGE: 52 Yrs. 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