{"id":5519,"date":"2021-09-20T00:30:58","date_gmt":"2021-09-20T00:30:58","guid":{"rendered":"https:\/\/www.lgmd-info.org\/?p=5519"},"modified":"2024-02-09T14:24:00","modified_gmt":"2024-02-09T14:24:00","slug":"individual-with-lgmd-sanjana","status":"publish","type":"post","link":"https:\/\/www.lgmd-info.org\/de\/individuals-with-lgmd-interviews\/2021\/09\/20\/individual-with-lgmd-sanjana\/","title":{"rendered":"EINZELPERSON MIT LGMD: Sanjana"},"content":{"rendered":"

\"<\/p>\n

LGMD \"SPOTLIGHT INTERVIEW\"<\/p>\n

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

Alter<\/strong>: 55 Jahre alt<\/p>\n

Land<\/strong>: Indien<\/p>\n

LGMD Unter-Typ<\/strong>: LGMD2A\/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 13 Jahren gestellt.<\/p>\n

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

Die ersten Symptome traten etwa im Alter von f\u00fcnf Jahren auf. Beim Treppensteigen oder Bergaufgehen ging ich auf Zehenspitzen. Beim Aufstehen aus einer sitzenden Position musste ich meine Knie abst\u00fctzen. Ich balancierte auf den Zehenspitzen, w\u00e4hrend ich in einer hockenden Position sa\u00df.<\/p>\n

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

Ja, bei meinen beiden \u00e4lteren Br\u00fcdern wurde ebenfalls LGMD2A\/R1 diagnostiziert.<\/p>\n

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

Die gr\u00f6\u00dften Herausforderungen sind die Aktivit\u00e4ten des t\u00e4glichen Lebens. Und dass ich meinen Eltern, die immer \u00e4lter werden, nicht helfen kann.<\/p>\n

Was ist Ihr gr\u00f6\u00dfter ERFOLG?<\/strong><\/p>\n

Meine gr\u00f6\u00dfte Errungenschaft war die Gr\u00fcndung einer Organisation f\u00fcr Muskeldystrophie - der Indian Association of Muscular Dystrophy. www.iamd.in<\/a> Und jetzt die Einrichtung eines Rehabilitationszentrums f\u00fcr alle Formen von Muskeldystrophie.<\/p>\n

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

Was ich heute bin, verdanke ich der LGMD. Ich habe 27 Jahre lang eine erfolgreiche Boutique f\u00fcr Damenmode gef\u00fchrt und nebenbei die Organisation f\u00fcr Muskeldystrophie gegr\u00fcndet.<\/p>\n

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

Ich m\u00f6chte, dass die Welt alles \u00fcber LGMD erf\u00e4hrt - die Symptome, die Herausforderungen, die Behandlung, die Rehabilitation, die neueste wissenschaftliche Forschung und die Organisation, die daran arbeitet, das Bewusstsein zu sch\u00e4rfen und den von dieser fortschreitenden neuromuskul\u00e4ren Krankheit betroffenen Personen und Familien Erleichterung zu verschaffen.<\/p>\n

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

Wenn ich geheilt werde, m\u00f6chte ich das Gleiche f\u00fcr jeden einzelnen diagnostizierten Menschen auf dieser Welt erreichen.<\/p>\n<\/div><\/div><\/div><\/div><\/div>","protected":false},"excerpt":{"rendered":"","protected":false},"author":3,"featured_media":5520,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[13,14],"tags":[],"class_list":["post-5519","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-individuals-with-lgmd-interviews","category-lgmd2a"],"acf":[],"yoast_head":"\nINDIVIDUAL WITH LGMD: Sanjana - 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\/2021\/09\/20\/individual-with-lgmd-sanjana\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"INDIVIDUAL WITH LGMD: Sanjana - 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