{"id":416,"date":"2015-02-12T22:30:56","date_gmt":"2015-02-13T04:30:56","guid":{"rendered":"http:\/\/mainstay-bg.com\/wp\/?p=161"},"modified":"2015-02-12T22:30:56","modified_gmt":"2015-02-13T04:30:56","slug":"161","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2015\/02\/12\/161\/","title":{"rendered":"EINZELPERSON MIT LGMD: Lydia"},"content":{"rendered":"

02\/12\/2014:\"LGMD2B<\/a><\/p>\n

NAME<\/strong>: Lydia<\/p>\n

Alter<\/strong>: 45<\/p>\n

LAND<\/strong>: Vereinigte Staaten<\/p>\n

LGMD TEIL-TYP<\/strong>: LGMD2B \/ Miyoshi<\/p>\n

IN WELCHEM ALTER WURDE BEI IHNEN DIE DIAGNOSE GESTELLT?<\/strong> 41<\/p>\n

WAS WAREN IHRE ERSTEN SYMPTOME?<\/strong>
\nZu meinen ersten Symptomen geh\u00f6rten: verrutschende Knie, Schmerzen in Beinen, F\u00fc\u00dfen, Brust, Nacken und Armen, St\u00fcrze, Lethargie und ein seltsamer Watschelgang.<\/p>\n

HABEN SIE ANDERE FAMILIENMITGLIEDER, DIE AN LGMD LEIDEN:<\/strong>
\nNein<\/p>\n

WAS SIND F\u00dcR SIE DIE GR\u00d6SSTEN HERAUSFORDERUNGEN IM LEBEN MIT LGMD:<\/strong>
\nDer fortschreitende Charakter der Krankheit ist be\u00e4ngstigend. Auch die Lethargie, die LGMD verursacht, ist sehr l\u00e4hmend. Abgesehen von der Erkrankung empfinde ich die mangelnde Zug\u00e4nglichkeit und die gesellschaftliche Einstellung gegen\u00fcber behinderten Menschen als sehr einschr\u00e4nkend.<\/p>\n

WAS IST IHRE GR\u00d6SSTE ERRUNGENSCHAFT:<\/strong>
\nDas ist eine schwierige Aufgabe. Ich habe es geschafft, zu arbeiten, mich um kleine Kinder, eine demenzkranke Mutter und meinen \u00e4lteren Vater zu k\u00fcmmern (zusammen mit der Unterst\u00fctzung meiner Geschwister) und einen Bachelor-Abschluss in Sozialarbeit zu machen. Wenn ich zur\u00fcckblicke, bin ich erstaunt, dass ich das alles geschafft habe.<\/p>\n

WIE HAT LGMD SIE ZU DER PERSON GEMACHT, DIE SIE HEUTE SIND?<\/strong>
\nEs hat mein Einf\u00fchlungsverm\u00f6gen gegen\u00fcber anderen erh\u00f6ht und war der Ansto\u00df f\u00fcr meine Entwicklung eines Bewusstseins f\u00fcr Behinderungen.<\/p>\n

WAS SOLL DIE WELT \u00dcBER LGMD WISSEN?<\/strong>
\nErstens, dass sie \u00fcberhaupt davon wissen. Selbst die meisten Mediziner wissen nichts von diesem Zustand.<\/p>\n

Zweitens ist sie fortschreitend und schw\u00e4chend.<\/p>\n

Drittens kann ich mit ziemlicher Sicherheit sagen, dass die meisten von uns, die es haben, es lieber anders h\u00e4tten, weshalb die Forschung und das \u00f6ffentliche Bewusstsein so wichtig sind.<\/p>\n

Viertens, und das ist ein Beispiel, diskutierten k\u00fcrzlich in einer unserer Online-Gruppen Menschen mit meiner Erkrankung \u00fcber die f\u00fcnf Dinge, die sie gerne tun w\u00fcrden, wenn sie geheilt w\u00e4ren. Dinge wie ihre Kinder in den Arm zu nehmen und geliebte Menschen zu umarmen. Das ist die verh\u00e4ngnisvolle Realit\u00e4t von LGMD.<\/p>\n

WENN IHRE LGMD MORGEN \"GEHEILT\" WERDEN K\u00d6NNTE, WAS W\u00c4RE DAS ERSTE, WAS SIE TUN W\u00dcRDEN?<\/strong>
\nIch w\u00fcrde gerne mit meiner Familie in einem Waldgebiet wandern gehen.<\/p>","protected":false},"excerpt":{"rendered":"

02\/12\/2014: NAME: Lydia Age: 45 COUNTRY: United States LGMD SUB-TYPE: […]<\/p>","protected":false},"author":1,"featured_media":162,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[23,25,16],"class_list":["post-416","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2b","tag-miyoshi","tag-united-states"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Lydia<\/title>\n<meta name=\"description\" content=\"Lydia, 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=\"http:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2015\/02\/12\/161\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"LGMD Spotlight Interview - 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