{"id":544,"date":"2015-04-03T14:49:59","date_gmt":"2015-04-03T19:49:59","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=544"},"modified":"2015-04-03T14:49:59","modified_gmt":"2015-04-03T19:49:59","slug":"lacey","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2015\/04\/03\/lacey\/","title":{"rendered":"OSOBA Z LGMD: Lacey"},"content":{"rendered":"

04\/03\/2015<\/p>\n

NAZWA<\/strong>: Lacey \u00a0\u00a0\u00a0WIEK<\/strong>:\u00a042\"LGMD2i<\/a><\/p>\n

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

Podtyp LGMD<\/strong>: LGMD2i<\/p>\n

 <\/p>\n

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

Dystrofi\u0119 mi\u0119\u015bniow\u0105 zdiagnozowano u mnie w wieku 16 lat, a LGMD2i w wieku 34 lat. Obie diagnozy zosta\u0142y postawione przez telefon. Z perspektywy czasu \u017ca\u0142uj\u0119, \u017ce lekarze nie powiedzieli mi o tym osobi\u015bcie, mia\u0142am tak wiele pyta\u0144 i by\u0142am przera\u017cona.<\/p>\n

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

Pierwszymi objawami, kt\u00f3re zauwa\u017cy\u0142em, by\u0142y bolesne skurcze n\u00f3g podczas biegania i niemo\u017cno\u015b\u0107 dotrzymania kroku innym dzieciom. Powiedziano mi, \u017ce jestem leniwa i powinnam bardziej si\u0119 stara\u0107 na wychowaniu fizycznym i w softballu. Pami\u0119tam, jak my\u015bla\u0142em: \"Staram si\u0119 jak mog\u0119, jak mog\u0119 sprawi\u0107, by biega\u0107 szybciej ni\u017c inne dzieci?\".<\/p>\n

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

Nie, nie mam innych cz\u0142onk\u00f3w rodziny cierpi\u0105cych na LGMD.<\/p>\n

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

Ci\u0105g\u0142e zmiany i pr\u00f3ba znalezienia sposobu na dostosowanie si\u0119 do mojej nowej normalno\u015bci.<\/p>\n

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

Moim najwi\u0119kszym osi\u0105gni\u0119ciem jest prze\u017cywanie ka\u017cdego dnia ze wsp\u00f3\u0142czuciem i odwag\u0105, bycie \u017con\u0105 mojego wspieraj\u0105cego m\u0119\u017ca i mam\u0105 naszych kochaj\u0105cych dziewczynek.<\/p>\n

JAK 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

Choroba LGMD zmusi\u0142a mnie do zwolnienia tempa, bycia obecnym i \u015bwiadomym. Dzi\u0119ki tej chorobie jestem silniejsz\u0105, bardziej empatyczn\u0105 osob\u0105. Nauczy\u0142am si\u0119 p\u0142aka\u0107 i \u015bmia\u0107 si\u0119 jednocze\u015bnie.<\/p>\n

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

Chcia\u0142abym, aby \u015bwiat mia\u0142 wi\u0119ksz\u0105 \u015bwiadomo\u015b\u0107 na temat LGMD, zw\u0142aszcza lekarze. Wiem, \u017ce dla wielu z nas droga do uzyskania diagnozy jest d\u0142uga, a wcale nie musi taka by\u0107. Niekt\u00f3re osoby cierpi\u0105ce na LGMD maj\u0105 problemy kardiologiczne i p\u0142ucne, dlatego uwa\u017cam, \u017ce bardzo wa\u017cne jest, aby do\u015bwiadczeni lekarze monitorowali i zapewniali wsparcie.<\/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>: Pierwsz\u0105 rzecz\u0105, kt\u00f3r\u0105 chcia\u0142bym zrobi\u0107, jest bieganie - chcia\u0142bym pami\u0119ta\u0107, jakie to uczucie. Czasami, gdy jad\u0119 skuterem, zamykam oczy i udaj\u0119, \u017ce biegn\u0119 - to troch\u0119 niebezpieczne \ud83d\ude42<\/p>","protected":false},"excerpt":{"rendered":"

04\/03\/2015 NAME: \u00a0Lacey \u00a0\u00a0\u00a0AGE:\u00a042 COUNTRY:\u00a0United States LGMD Sub-Type:\u00a0LGMD2i   AT […]<\/p>","protected":false},"author":1,"featured_media":542,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,35],"tags":[36,16],"class_list":["post-544","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2i","tag-lgmd2i","tag-united-states"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Lacey<\/title>\n<meta name=\"description\" content=\"Lacey, who is diagnosed with Limb Girdle Muscular Dystrophy (LGMD), shares her experience in living with this progressive neuro-muscular disease.\" \/>\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\/2015\/04\/03\/lacey\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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