{"id":2727,"date":"2019-06-12T14:29:32","date_gmt":"2019-06-12T19:29:32","guid":{"rendered":"https:\/\/restruct-lgmd-2021.pantheonsite.io\/?p=2727"},"modified":"2019-06-12T14:29:32","modified_gmt":"2019-06-12T19:29:32","slug":"individual-with-lgmd-jillena","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2019\/06\/12\/individual-with-lgmd-jillena\/","title":{"rendered":"EINZELPERSON MIT LGMD: Jillena"},"content":{"rendered":"
\"\"<\/figure>\n\n\n\n

LGMD\n\"Spotlight-Interview\"<\/strong><\/p>\n\n\n\n

Name<\/strong>: Jillena\n Alter<\/strong>: 32 Jahre alt<\/p>\n\n\n\n

Land<\/strong>: Vereinigte\nStaaten<\/p>\n\n\n\n

LGMD Unter-Typ<\/strong>: LGMD2A - eine Form der Calpainopathie<\/p>\n\n\n\n

IN WELCHEM ALTER WURDEN SIE DIAGNOSTIZIERT? <\/strong>:<\/p>\n\n\n\n

Die Diagnose LGMD wurde bei mir erstmals im Alter von\nAlter von 21 Jahren. Und dann erhielt ich vor einigen Monaten die genetische\nvor ein paar Monaten die Best\u00e4tigung meines LGMD2A-Subtyps.<\/p>\n\n\n\n

WAS WAREN IHRE ERSTEN SYMPTOME? <\/strong>:<\/p>\n\n\n\n

Nachdem ich mein zweites Kind bekommen hatte, begann ich zu\nmerkte ich, dass Treppen f\u00fcr mich schwierig wurden. Ich kroch sie sogar hinauf. I\nhatte Skoliose, also schrieb ich meine Schwierigkeiten beim Treppensteigen einfach der Skoliose zu.\nAber dann bekam ich mein zweites Kind und konnte mein Bein nicht mehr so leicht auf eine Bordsteinkante heben.\nleicht anheben. Au\u00dferdem war ich immer d\u00fcnn und\nwusste nie, warum. Meine Mutter bef\u00fcrchtete, dass etwas nicht stimmte, und \u00fcberzeugte mich, einen\nArzt zu gehen.<\/p>\n\n\n\n

HABEN SIE ANDERE FAMILIENMITGLIEDER, DIE\nLGMD HABEN:<\/strong><\/p>\n\n\n\n

In meiner Familie wurde bei niemandem LGMD diagnostiziert, aber meine Mutter hatte einen Bruder, der mit einer k\u00f6rperlichen Behinderung lebte. Wir glauben, er hatte Duchenne-Muskeldystrophie.<\/p>\n\n\n\n

WAS SIND IHRER MEINUNG NACH DIE GR\u00d6SSTEN\nHERAUSFORDERUNGEN IM LEBEN MIT LGMD <\/strong>:<\/p>\n\n\n\n

Der erste Punkt ist der Kampf, den meine Familie durchmachen muss, den sie\ndie sie nicht h\u00e4tte, wenn ich diese Krankheit nicht h\u00e4tte. Zweitens die Tatsache, dass ich nicht mehr wie fr\u00fcher einfach gehen, gehen, gehen kann.\nkonnte. Meine Arme und Beine sind schw\u00e4cher geworden, was es f\u00fcr mich sehr anstrengend macht, viel zu tun.<\/p>\n\n\n\n

WAS IST IHRE GR\u00d6SSTE ERRUNGENSCHAFT? <\/strong>:<\/p>\n\n\n\n

Meine gr\u00f6\u00dfte Errungenschaft ist meine j\u00fcngste \u00c4nderung der Einstellung. I\nhabe erkannt, dass eine negative Einstellung zu meiner Krankheit und meinem Schicksal niemandem hilft. Ich habe nicht nur beschlossen, das Leben durch eine andere Brille zu sehen\ndurch eine andere Brille zu sehen, sondern ich habe auch beschlossen, diese\nIch habe auch beschlossen, diese Brille mit der Welt zu teilen, indem ich meine Lebensreise auf einer von mir eingerichteten Facebook-Seite vorstelle.<\/p>\n\n\n\n

WIE HAT LGMD SIE BEEINFLUSST UND\nDIE PERSON ZU WERDEN, DIE SIE HEUTE SIND:<\/strong><\/p>\n\n\n\n

Sobald ich akzeptiert hatte, dass ich diese Krankheit hatte\nund dass ich nicht ungl\u00fccklich sein muss, habe ich eine Seite auf Facebook eingerichtet. Ich fing einfach an, Ratschl\u00e4ge zu geben, wie man\npositiv zu sein. Inzwischen ist daraus so viel mehr geworden. Ich habe jetzt so viele Facebook-Freunde\ndie zu einem gro\u00dfartigen Unterst\u00fctzungssystem geworden sind. Au\u00dferdem habe ich meine Geschichte in einer Rede f\u00fcr die Shamrock\nSpendenaktion f\u00fcr die MDA erz\u00e4hlt. Ich bin aufgebl\u00fcht\nzu einer Person geworden, die m\u00f6chte, dass jeder seinen Wert erkennt! Vor zehn Jahren habe ich mich nicht\nnicht um mich selbst gek\u00fcmmert - geschweige denn um andere Menschen.<\/p>\n\n\n\n

WAS SOLL DIE WELT WISSEN?\n\u00dcBER LGMD <\/strong>:<\/p>\n\n\n\n

Ich m\u00f6chte, dass die Welt wei\u00df, dass LGMD eine extrem schwierige Krankheit ist\nmit ihr umzugehen, weil sie einem die Unabh\u00e4ngigkeit nimmt. Wenn man\nWenn man \u00e4lter wird, werden die Muskeln schw\u00e4cher, was die Mobilit\u00e4t einschr\u00e4nkt. Das ist hart,\nvor allem, wenn man drei Kinder hat, die herumlaufen m\u00fcssen.<\/p>\n\n\n\n

WENN IHRE LGMD MORGEN \"GEHEILT\" WERDEN K\u00d6NNTE\nWAS W\u00dcRDEN SIE MORGEN ALS ERSTES TUN WOLLEN? <\/strong>:<\/p>\n\n\n\n

Ich w\u00fcrde wandern gehen\nin den Bergen von Colorado mit meiner Familie!<\/p>\n\n\n\n

* * * Um weitere \"LGMD Spotlight Interviews\" zu lesen oder um sich f\u00fcr ein Interview zur Verf\u00fcgung zu stellen, besuchen Sie bitte unsere Website unter https:\/\/www.lgmd-info.org\/spotlight-interviews<\/a><\/p>","protected":false},"excerpt":{"rendered":"

LGMD \u201cSpotlight interview\u201d Name:  Jillena  Age: 32 yrs. old Country: […]<\/p>","protected":false},"author":1,"featured_media":2728,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-2727","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Jillena - 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\/2019\/06\/12\/individual-with-lgmd-jillena\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Jillena - 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