{"id":5588,"date":"2022-01-07T02:44:43","date_gmt":"2022-01-07T02:44:43","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5588"},"modified":"2024-02-09T14:23:57","modified_gmt":"2024-02-09T14:23:57","slug":"individual-with-lgmd-sophia","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2022\/01\/07\/individual-with-lgmd-sophia\/","title":{"rendered":"EINZELPERSON MIT LGMD: Sophia"},"content":{"rendered":"

\"<\/p>\n

LGMD \"Spotlight Interview\" <\/strong><\/h2>\n

Name<\/strong>: Sophia<\/p>\n

Alter<\/strong>: \u00a08<\/p>\n

Land<\/strong>: USA<\/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

Ich wurde offiziell im Alter von 6 Jahren durch einen genetischen Bluttest diagnostiziert.<\/p>\n

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

Ich hatte eine Lungenentz\u00fcndung, als ich 4,5 Jahre alt war, und meine Mutter brachte mich zur Blutuntersuchung, weil ich lange krank war. Meine Leberenzymwerte waren sehr hoch, also begannen die \u00c4rzte nach einer Ursache zu suchen. Au\u00dferdem fing ich an, auf den Zehen zu laufen. Ich ging in vielen Krankenh\u00e4usern ein und aus und wurde 1,5 Jahre lang fehldiagnostiziert. Es war be\u00e4ngstigend, aber ich war sehr tapfer.<\/p>\n

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

Nicht dass wir w\u00fcssten.<\/p>\n

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

Meine gr\u00f6\u00dfte Herausforderung ist es, weit laufen zu m\u00fcssen, da meine Beine sehr m\u00fcde werden, und zu sehen, wie Kinder beim Spielen Dinge tun, von denen ich wei\u00df, dass sie meine Beine und Arme erm\u00fcden werden. Fr\u00fcher konnte ich auch auf dem Affenbarren turnen. Das macht mich traurig. Meine Familie findet immer Wege, mir zu helfen, aber es ist trotzdem schwer, andere Kinder in meinem Alter rennen und spielen zu sehen, ohne dass sie so schnell m\u00fcde werden wie ich.<\/p>\n

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

Ich habe mit meinen 3rd<\/sup> Klasse in meiner neuen Schule \u00fcber meine LGMD2A-Erkrankung zu informieren, obwohl ich wirklich Angst hatte. Ich helfe dabei, das Bewusstsein daf\u00fcr zu sch\u00e4rfen, damit andere Kinder nicht so viel durchmachen m\u00fcssen, bis die Diagnose gestellt wird, und damit wir ein Heilmittel finden. Ich kann Zirkuscamp und R\u00fcckenbeugen machen, obwohl ich Muskeldystrophie habe. Ich lasse mich nicht davon abhalten, neue Dinge auszuprobieren, auch wenn ich wei\u00df, dass es schwer sein wird. Ich habe auch gelernt, wie man ein Elektrofahrrad f\u00e4hrt, damit ich mit meinen Freunden spielen kann.<\/p>\n

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

Das hat mich sehr mutig gemacht. Ich stelle mich meinen \u00c4ngsten, vor Leuten hinzufallen und Krankenhausbesuche zu machen, und das macht mich stark. Ich sehe nicht die Behinderungen der Menschen oder starre sie an, sondern ich sehe sie. Ich lerne auch, mich so zu akzeptieren, wie ich bin.<\/p>\n

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

Man kann ein sehr gl\u00fcckliches Leben f\u00fchren, und Eltern m\u00fcssen wissen, dass Kinder wie ich auch mit Muskeldystrophie gl\u00fccklich sind. Obwohl ich die Krankheit habe, finde ich Wege, mich fortzubewegen und benutze meinen Rollstuhl, wenn ich ihn brauche. Das ist nicht immer einfach und kann be\u00e4ngstigend sein, wenn der eigene K\u00f6rper nicht so funktioniert, wie man es sich w\u00fcnscht. Ich m\u00f6chte, dass die Welt wei\u00df, dass Kinder wie ich auf eine Heilung warten.<\/p>\n

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

Ich w\u00fcrde sehr schnell und weit laufen wollen, Fahrrad fahren, auf dem Kletterger\u00fcst turnen und viel Gymnastik machen.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5587,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[70],"class_list":["post-5588","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: Sophia - 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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