{"id":5582,"date":"2021-12-12T18:05:10","date_gmt":"2021-12-12T18:05:10","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5582"},"modified":"2024-02-09T14:23:57","modified_gmt":"2024-02-09T14:23:57","slug":"individual-with-lgmd-soralla","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2021\/12\/12\/individual-with-lgmd-soralla\/","title":{"rendered":"EINZELPERSON MIT LGMD: Soralla"},"content":{"rendered":"

\"Lgmd2a<\/p>\n

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

N<\/strong>ame<\/strong>: Soralla<\/p>\n

Alter<\/strong>: 28<\/p>\n

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

LGMD Unter-Typ<\/strong>: LGMD 2A\/R1 Calpain 3-verwandt<\/p>\n

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

Die Diagnose wurde bei mir im Alter von 23 Jahren gestellt.<\/p>\n

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

Meine Symptome waren anfangs eine leichte Schw\u00e4che des Unterk\u00f6rpers, es fiel mir schwer, die Treppe so schnell zu steigen wie sonst, oder vom Boden aufzustehen, vor allem, wenn wir im Sportunterricht im Hof sa\u00dfen. Denken Sie daran, dass diese Symptome in der 11.th<\/sup> Klasse der High School. Dennoch wurde die Diagnose erst mit 23 Jahren gestellt.<\/p>\n

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

Bei keinem anderen Familienmitglied ist LGMD diagnostiziert worden. Ich habe zwei j\u00fcngere Geschwister, die noch nicht getestet wurden, aber sie sind \u00fcber 23 Jahre alt, und beiden geht es derzeit gut.<\/p>\n

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

F\u00fcr mich pers\u00f6nlich besteht die gr\u00f6\u00dfte Herausforderung darin, die Person zu akzeptieren, die ich werde. Ich sage das, weil ich manchmal feststelle, dass viele Ver\u00e4nderungen, die ich durchmache, nicht meine Entscheidung sind und sich meiner Kontrolle entziehen. Eine davon ist, dass ich langsam meine Unabh\u00e4ngigkeit verliere, f\u00fcr mich selbst zu sorgen. Nachdem ich ein sehr unabh\u00e4ngiges Leben gef\u00fchrt habe und das Gef\u00fchl hatte, dass mir die Welt zu F\u00fc\u00dfen liegt, war und ist das Gef\u00fchl, diese Zukunftsvision zu verlieren, wahrscheinlich die gr\u00f6\u00dfte Herausforderung f\u00fcr mich.<\/p>\n

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

Meine gr\u00f6\u00dfte Errungenschaft ist es, meine Stimme zu finden. Ich bin keine so gro\u00dfe F\u00fcrsprecherin, wie ich es gerne w\u00e4re, aber ich habe ein paar Mal \u00fcber mich und meine Geschichte gesprochen. Ich habe einen YouTube-Kanal eingerichtet und meine Geschichte aus meiner eigenen Perspektive erz\u00e4hlt. Ich bin auch sehr stolz auf mich, dass ich wieder zur Schule gegangen bin, um meine Ausbildung zu beenden, die aufgrund der Diagnose dieser Behinderung ins Stocken geraten war.<\/p>\n

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

Es hat mein Herz, meinen Verstand und meine Seele auf eine Weise ge\u00f6ffnet, wie es nichts anderes je k\u00f6nnte. Ich m\u00f6chte glauben, dass ich immer sehr einf\u00fchlsam war und ein gro\u00dfes Herz hatte, aber leider ein sehr schwaches Herz. Ich wurde als Kind viel gemobbt und habe ein Trauma erlebt. Jetzt, wo ich das durchmache, habe ich das Gef\u00fchl, dass all das aus der Vergangenheit mein Herz auf diesen Kampf vorbereitet hat. Ich sage das laut und stolz, weil ich jetzt emotional st\u00e4rker bin, als ich es mir je vorstellen konnte. Wenn ich heute mit meinem j\u00fcngeren Ich \u00fcber mich sprechen w\u00fcrde, w\u00fcrde ich mir selbst nicht glauben.<\/p>\n

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

Ich m\u00f6chte, dass die Welt wei\u00df, dass wir wichtig sind. LGMD ist eine k\u00f6rperliche Behinderung, aber sie wirkt sich auch auf die emotionale, mentale und sogar spirituelle Gesundheit aus. Bitte helfen Sie anderen, ihre Wahrheiten und Geschichten zu erz\u00e4hlen, und helfen Sie uns, unsere Botschaft der Hoffnung in die Welt zu tragen, dass wir eines Tages eine Heilung finden k\u00f6nnen.<\/p>\n

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

Wenn ich morgen geheilt werden k\u00f6nnte, g\u00e4be es so viele Dinge, Abenteuer, Ausfl\u00fcge und Veranstaltungen, an denen ich teilnehmen und die ich besuchen w\u00fcrde. Aber eines w\u00fcrde ich auf jeden Fall weiterhin tun: mich daf\u00fcr einsetzen, dass jeder, der geheilt werden kann, die Chance bekommt, die er verdient. Denn nachdem ich mit dieser Krankheit gelebt habe, kann ich nicht mehr aufstehen, mein Leben leben und niemals zur\u00fcckblicken, als w\u00e4re nie etwas passiert.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5581,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,22],"tags":[70],"class_list":["post-5582","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2b","tag-lgmd2a-calpainopathy-united-states"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Soralla - 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\" 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