Gastroparese - Magenlähmung nennt sich meine "neue" Krankheit, die eine Folge des Wilkie-Syndroms wäre, sagt der Spezialist. Seit gut einem Monat schaffe ich es tatsächlich ohne parenteraler Ernährung. Mal geht es besser, dann wieder schlechter. Das Medikament, das dagegen helfen sollte, wurde von der österreichischen Krankenkasse abgelehnt. Auch in Deutschland ist eine Bewilligung schwer zu erreichen. Der Grund: das Medikament ist nicht für diese Erkrankung zugelassen. Aber es würde helfen. Also bleibt nichts anderes übrig als mit der Einschränkung zu leben. Ich versuche einen möglichst normalen Alltag. An manchen Tagen bleibt dies allerdings nur ein Versuch.
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auf der Farm in Kenia
Rumänien 2016
Heuwagen
"steriler" Arbeitsplatz in Kenia
in der Schulküche
1. internationale Wilkie-Treffen 2015
Benedictus-Chor
Familienbesuch bei Kanze
Spiel und Spaß
Alltag mit dem Infusionsrucksack
