{"id":961,"date":"2015-07-22T13:35:05","date_gmt":"2015-07-22T18:35:05","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=961"},"modified":"2015-07-22T13:35:05","modified_gmt":"2015-07-22T18:35:05","slug":"leanne","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/pl\/individuals-with-lgmd-interviews\/2015\/07\/22\/leanne\/","title":{"rendered":"OSOBA Z LGMD: Leanne"},"content":{"rendered":"<p>07\/22\/2015:<\/p>\n<p><strong>NAZWA<\/strong>: Leanne <strong>WIEK<\/strong>: 50 lat<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2015\/07\/LGMD2A-Leanne.png\"><img decoding=\"async\" class=\"lazyload  size-medium wp-image-962 alignright\" src=\"data:image\/svg+xml,%3Csvg%20xmlns%3D%27http%3A%2F%2Fwww.w3.org%2F2000%2Fsvg%27%20width%3D%27300%27%20height%3D%27169%27%20viewBox%3D%270%200%20300%20169%27%3E%3Crect%20width%3D%27300%27%20height%3D%27169%27%20fill-opacity%3D%220%22%2F%3E%3C%2Fsvg%3E\" data-orig-src=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2015\/07\/LGMD2A-Leanne-300x169.png\" alt=\"LGMD2A - Leanne\" width=\"300\" height=\"169\" \/><\/a><br \/>\n<strong>KRAJ<\/strong>: Australia<br \/>\n<strong>Podtyp LGMD<\/strong>: LGMD2A \/ kalpainopatia<\/p>\n<p><strong>W JAKIM WIEKU ZOSTA\u0141E\u015a ZDIAGNOZOWANY?<\/strong>:<br \/>\nChorob\u0119 zdiagnozowano u mnie w wieku 42 lat podczas biopsji mi\u0119\u015bnia.<\/p>\n<p><strong>JAKIE BY\u0141Y PIERWSZE OBJAWY<\/strong>:<br \/>\nTraci\u0142em wag\u0119 w okolicach bioder i po\u015bladk\u00f3w. Po diagnozie inne rzeczy zacz\u0119\u0142y si\u0119 uk\u0142ada\u0107 w ca\u0142o\u015b\u0107, tj. wi\u0119ksze trudno\u015bci ze wstawaniem z przysiadu, brak energii po pracy na si\u0142owni i brak spr\u0119\u017cysto\u015bci przy wchodzeniu po schodach.<\/p>\n<p><strong>CZY MASZ INNYCH CZ\u0141ONK\u00d3W RODZINY, KT\u00d3RZY CHORUJ\u0104 NA LGMD?<\/strong>:<br \/>\nNie, jestem jedynym cz\u0142onkiem rodziny, u kt\u00f3rego zdiagnozowano LGMD.<\/p>\n<p><strong>CO UWA\u017bASZ ZA NAJWI\u0118KSZE WYZWANIE W \u017bYCIU Z LGMD?<\/strong>:<br \/>\nBrak spontaniczno\u015bci w dzia\u0142aniach, zw\u0142aszcza w podr\u00f3\u017cach solo, tj. \"zabawa\" aparatem, zakupy.<\/p>\n<p>Musz\u0119 zacz\u0105\u0107 prosi\u0107 o zrobienie czego\u015b, gdy zawsze wygodniej jest mi by\u0107 pomocnikiem\/wykonawc\u0105.<\/p>\n<p>Konieczno\u015b\u0107 ponownej oceny i ponownego zdefiniowania moich cel\u00f3w i nadziei na przysz\u0142o\u015b\u0107, aby dopasowa\u0107 si\u0119 do ogranicze\u0144, kt\u00f3re istniej\u0105 teraz i b\u0119d\u0105 nadal istnie\u0107 bez jasnych wytycznych co do tego, jak i kiedy LMGD b\u0119dzie si\u0119 rozwija\u0107 ze wzgl\u0119du na jego niesp\u00f3jny charakter.<\/p>\n<p><strong>JAKIE JEST TWOJE NAJWI\u0118KSZE OSI\u0104GNI\u0118CIE?<\/strong>:<br \/>\nMam nadziej\u0119, \u017ce jestem dobr\u0105, troskliw\u0105 osob\u0105 we wszystkich moich zwi\u0105zkach i \u017ce pomog\u0142em zaszczepi\u0107 moim m\u0142odym doros\u0142ym dzieciom dobr\u0105 moralno\u015b\u0107 i warto\u015bci.<\/p>\n<p><strong>JAK CHOROBA ALZHEIMERA WP\u0141YN\u0118\u0141A NA TO, \u017bE STA\u0141E\u015a SI\u0118 OSOB\u0104, KT\u00d3R\u0104 JESTE\u015a DZISIAJ?<\/strong>:<br \/>\nJestem zdecydowanie bardziej empatyczna, mniej si\u0119 spiesz\u0119 (hahaha) i bardziej akceptuj\u0119 fakt, \u017ce \u017cycie nie zawsze jest us\u0142ane r\u00f3\u017cami.<\/p>\n<p><strong>CO CHCIA\u0141BY\u015a, ABY \u015aWIAT DOWIEDZIA\u0141 SI\u0118 O LGMD?<\/strong>:<br \/>\nChcia\u0142bym, aby by\u0142a tak \u0142atwo rozpoznawalna w\u015br\u00f3d opinii publicznej, jak takie schorzenia jak ALS (MND); wci\u0105\u017c walcz\u0105 o uznanie, ale maj\u0105 prawdopodobnie wy\u017cszy profil ni\u017c choroby uk\u0142adu mi\u0119\u015bniowo-szkieletowego, rak, stwardnienie rozsiane i wiele innych, aby pom\u00f3c ludziom w zrozumieniu i edukacji na temat wymaganych potrzeb.<\/p>\n<p><strong>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>:<br \/>\nWszystkie s\u0105 tak samo rozliczane - id\u0119 na du\u017cy rodzinny spacer, zabieram aparat na pla\u017c\u0119, podr\u00f3\u017cuj\u0119 wsz\u0119dzie bez wcze\u015bniejszego planowania, przemeblowuj\u0119 i urz\u0105dzam ogr\u00f3d!!!<\/p>\n<p>&nbsp;<\/p>","protected":false},"excerpt":{"rendered":"<p>07\/22\/2015: NAME: Leanne AGE: 50 yrs. old COUNTRY: Australia LGMD [&hellip;]<\/p>","protected":false},"author":1,"featured_media":962,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[51,12,19],"class_list":["post-961","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-australia","tag-calpainopathy","tag-lgmd-2a"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>LGMD Spotlight Interview - Leanne<\/title>\n<meta name=\"description\" content=\"Leanne 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\/07\/22\/leanne\/\" \/>\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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