{"id":1282,"date":"2016-07-26T15:59:21","date_gmt":"2016-07-26T20:59:21","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=1282"},"modified":"2016-07-26T15:59:21","modified_gmt":"2016-07-26T20:59:21","slug":"maram","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2016\/07\/26\/maram\/","title":{"rendered":"EINZELPERSON MIT LGMD: Maram"},"content":{"rendered":"<p><strong>07\/26\/2016 &#8211;\u00a0<\/strong>LGMD \"Spotlight Interview\"<\/p>\n<p><strong>NAME<\/strong>:  Maram\u00a0\u00a0\u00a0 <strong>AGE<\/strong>: 26 Jahre alt<a href=\"https:\/\/www.lgmd-info.org\/wp-content\/uploads\/2016\/07\/LGMD2E-Maram.png\"><img decoding=\"async\" class=\"lazyload size-medium wp-image-1281 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\/2016\/07\/LGMD2E-Maram-300x169.png\" alt=\"LGMD2E - Maram\" width=\"300\" height=\"169\" \/><\/a><\/p>\n<p><strong>LAND<\/strong>: Pal\u00e4stina<\/p>\n<p><strong>LGMD Unter-Typ<\/strong>: LGMD2E<\/p>\n<p>&nbsp;<\/p>\n<p><strong>In welchem Alter wurde bei Ihnen die Diagnose gestellt?<\/strong>:<\/p>\n<p>Bei mir wurde im Alter von 10 Jahren Muskeldystrophie diagnostiziert.  Als ich 26 Jahre alt war, erhielt ich die genetische Best\u00e4tigung meiner LGMD2E-Diagnose.<\/p>\n<p><strong>Was waren Ihre ersten Symptome?<\/strong>:<\/p>\n<p>Als ich 3 Jahre alt war, bemerkten meine Eltern, dass mein Gang unsicher war und es mir schwer fiel, mich vom Boden zu erheben.<\/p>\n<p><strong>Haben Sie andere Familienmitglieder, die LGMD haben?<\/strong><\/p>\n<p>Nein, ich bin der Einzige in meiner Familie.<\/p>\n<p><strong>Was sind f\u00fcr Sie die gr\u00f6\u00dften Herausforderungen im Leben mit LGMD?<\/strong>:<\/p>\n<p>Es gibt so viele Herausforderungen.  F\u00fcr viele Menschen sind einfache Dinge die gr\u00f6\u00dfte Herausforderung, aber wenn ich auf die Toilette gehe oder meine Position im Schlaf ver\u00e4ndere, f\u00fchle ich mich so schwach.<\/p>\n<p><strong>Was ist Ihre gr\u00f6\u00dfte Errungenschaft?<\/strong>:<\/p>\n<p>Nun, in meinem Land wissen die Menschen nichts \u00fcber LGMD.  Ich versuche jeden Tag, das Bewusstsein f\u00fcr diese Krankheit \u00fcber die sozialen Medien zu sch\u00e4rfen.  Ich habe vielen Patienten in meinem Land und in der arabischen Welt zu einem Gentest verholfen, um ihre Diagnose zu best\u00e4tigen und die Ausr\u00fcstung zu bekommen, die wir brauchen, um uns das Leben ein wenig leichter zu machen.  Ich habe auch Kontakt zu meinen Patienten aus aller Welt aufgenommen, und wir sind enge Freunde geworden.  Sie sind mein gr\u00f6\u00dfter Erfolg.<\/p>\n<p><strong>Wie hat LGMD Sie zu der Person gemacht, die Sie heute sind?<\/strong><\/p>\n<p>Ich glaube, es hat mich auf die eine oder andere Weise st\u00e4rker gemacht.  Ich bin f\u00fcrsorglicher gegen\u00fcber den Menschen um mich herum geworden. Ich sch\u00e4tze jeden kleinen Segen in meinem Leben, einschlie\u00dflich meiner gro\u00dfartigen Familie.  Ich bin n\u00e4her an Gott herangekommen.  Ich glaube, es hat mich auf eine gute Art und Weise ver\u00e4ndert und ich mag, wer ich heute bin.<\/p>\n<p><strong>Was m\u00f6chten Sie der Welt \u00fcber LGMD mitteilen?<\/strong>:<\/p>\n<p>Ich m\u00f6chte, dass sie wissen, dass wir uns nicht so sehr von normalen Menschen unterscheiden.   Was ist passiert, dass ein einfacher genetischer Fehler oder eine Mutation dazu gef\u00fchrt hat, dass ich mich nur schwer bewegen kann, w\u00e4hrend sie es k\u00f6nnen?  Die Ursache ist gar nicht so kompliziert, und wenn wir das verstehen, k\u00f6nnen wir auch die Behandlung finden.<\/p>\n<p><strong>Wenn Ihre LGMD morgen \"geheilt\" werden k\u00f6nnte, was w\u00fcrden Sie als Erstes tun wollen?<\/strong>:<\/p>\n<p>Am liebsten w\u00fcrde ich meine Eltern ganz fest umarmen und sie nie wieder loslassen.  Ich denke st\u00e4ndig daran, wie schwer das Leben ohne sie w\u00e4re.<\/p>\n<p>Wenn Sie weitere \"LGMD Spotlight-Interviews\" lesen oder sich f\u00fcr ein bevorstehendes Interview zur Verf\u00fcgung stellen m\u00f6chten, besuchen Sie bitte unsere Website unter: https:\/\/www.lgmd-info.org\/spotlight-interviews<\/p>","protected":false},"excerpt":{"rendered":"<p>07\/26\/2016 &#8211;\u00a0LGMD &#8220;Spotlight Interview&#8221; NAME:\u00a0 Maram\u00a0\u00a0\u00a0 AGE: 26 years old [&hellip;]<\/p>","protected":false},"author":1,"featured_media":1281,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,62],"tags":[63],"class_list":["post-1282","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2e","tag-lgmd2e-palestine"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v23.9 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>INDIVIDUAL WITH LGMD: Maram - 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\/de\/individuals-with-lgmd-interviews\/2016\/07\/26\/maram\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Maram - LGMD Awareness Foundation\" \/>\n<meta property=\"og:description\" content=\"07\/26\/2016 &#8211;\u00a0LGMD &#8220;Spotlight Interview&#8221; 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