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in der Schulküche
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Alltag mit dem Infusionsrucksack
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"steriler" Arbeitsplatz in Kenia
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Spiel und Spaß
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auf der Farm in Kenia
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Rumänien 2016
Heuwagen
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Familienbesuch bei Kanze
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Benedictus-Chor
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1. internationale Wilkie-Treffen 2015

Ehlers Danlos Syndrom

Warum sollte ich seit Kindheit zwei verschiedene Erkrankungen haben, eine im Bauch und eine im Bewegungsapparat?

25 Jahre nach dem ersten Arztbesuch wegen Schmerzen im Bauch konnte das sehr seltene Wilkie-Syndrom festgestellt werden. Meine Beschwerden durch Überbeweglichkeit passten da aber nicht dazu. Ich machte eine kleine Umfrage in der Selbsthilfegruppe. Ein signifikanter Anteil der Patienten mit Kompressionssyndromen hat auch überbewegliche Gelenke und Beschwerden im Bewegungsapparat. Für mich war es klar: Es gibt einen Zusammenhang. Diese kleine Umfrage hat einen Stein ins Rollen gebracht. Inzwischen forschen einige Ärzte sehr intensiv zu diesem Thema. Und bei mir wurde schließlich das Ehlers Danlos Syndrom vom hypermobilen Typ diagnostiziert. 

Im American Journal of medical genetics findet sich der Artikel: Surgical treatment of abdominal compression syndromes: The significance of hypermobility-related disorders

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