{"id":1042,"date":"2015-10-16T12:01:06","date_gmt":"2015-10-16T17:01:06","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1042"},"modified":"2015-10-16T12:01:06","modified_gmt":"2015-10-16T17:01:06","slug":"annette","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2015\/10\/16\/annette\/","title":{"rendered":"EINZELPERSON MIT LGMD: Annette"},"content":{"rendered":"

10\/16\/2016<\/strong><\/p>\n

NAME<\/strong>: Annette \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 AGE<\/strong>: 40-50 Jahre alt\"LGMD2B<\/a><\/p>\n

LAND<\/strong>: Irland<\/p>\n

LGMD Unter-Typ<\/strong>: LGMD2B<\/p>\n

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

In welchem Alter wurde bei Ihnen die Diagnose gestellt?<\/strong>:<\/p>\n

Ich wurde im Alter von 38 Jahren diagnostiziert.<\/p>\n

Was waren Ihre ersten Symptome?<\/strong>:<\/p>\n

Ich stolperte und fiel hin. Ich hatte auch Probleme, aus einer sitzenden Position aufzustehen und Treppen zu steigen.<\/p>\n

Haben Sie andere Familienmitglieder, die LGMD haben?<\/strong><\/p>\n

Nein, ich bin die einzige Person in meiner Familie mit dieser Diagnose.<\/p>\n

Was sind f\u00fcr Sie die gr\u00f6\u00dften Herausforderungen im Leben mit LGMD?<\/strong>:<\/p>\n

Das Bewusstsein daf\u00fcr ist nicht vorhanden. Dar\u00fcber hinaus sind viele Einrichtungen in Dublin (Verkehrsmittel, Restaurants, einige Theater) nicht ann\u00e4hernd rollstuhlgerecht.<\/p>\n

LGMD hat sich auf mein Berufsleben ausgewirkt, da ich nicht mehr in der Lage bin, Vollzeit zu arbeiten, und das hat auch finanzielle Folgen.<\/p>\n

Was ist Ihre gr\u00f6\u00dfte Errungenschaft?<\/strong>:<\/p>\n

Ich versuche, positiv und optimistisch zu bleiben. Ich habe das Gl\u00fcck, dass ich ein fast unabh\u00e4ngiges Leben f\u00fchren kann. Ich freue mich, dass ich an einer klinischen Ergebnisstudie in Newcastle, Gro\u00dfbritannien, teilnehmen kann (die Menschen dort sind wunderbar).<\/p>\n

Wie hat LGMD Sie zu der Person gemacht, die Sie heute sind?<\/strong><\/p>\n

Ich bin dankbar f\u00fcr das, was ich tun kann, und versuche, nicht niedergeschlagen zu sein angesichts der Dinge, die nicht mehr m\u00f6glich sind.<\/p>\n

Was m\u00f6chten Sie der Welt \u00fcber LGMD mitteilen?<\/strong>:<\/p>\n

Ich bin gesegnet mit einer wunderbaren Familie und einem festen Freundeskreis, der mich nie im Stich l\u00e4sst.<\/p>\n

LGMD ist eine Herausforderung, aber mit einem guten Unterst\u00fctzungssystem kann das Leben gut sein. Damit LGMD behandelt werden kann und nicht zu einer lebensver\u00e4ndernden Krankheit wird, sind h\u00f6here Mittelzuweisungen unerl\u00e4sslich.<\/p>\n

Wenn Ihre LGMD morgen \"geheilt\" werden k\u00f6nnte, was w\u00fcrden Sie als Erstes tun wollen?<\/strong>:<\/p>\n

Ich w\u00fcrde mit meiner geliebten Nichte Emily spielen, sie in den Park bringen und all die Dinge tun, die eine gute Tante tun sollte.<\/p>\n

Um weitere \"LGMD Spotlight Interviews\" zu lesen oder sich f\u00fcr ein LGMD Spotlight Interview anzumelden, besuchen Sie bitte unsere Website unter: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

10\/16\/2016 NAME:\u00a0 Annette \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 AGE: 40-50 yrs old COUNTRY:\u00a0 Ireland […]<\/p>","protected":false},"author":1,"featured_media":1043,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[56,23],"class_list":["post-1042","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-ireland","tag-lgmd2b"],"acf":[],"yoast_head":"\nLGMD Spotlight Interview - Annette<\/title>\n<meta name=\"description\" content=\"Annette, 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\/de\/individuals-with-lgmd-interviews\/2015\/10\/16\/annette\/\" \/>\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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