Paula’s Story
We live in Germany and we have two children, Niklas (6 years) and Paula (3). When Paula was
about ½ year old, she was diagnosed with the Degos Disease.
She has about 15 lesions at her skin, but at the moment there were no more new lesions since March 2002.
As our Doctor (University of Frankfurt am Main) told us about this diagnosis, we couldn’t believe it and it was very difficult to get further information about it, nobody seemed to know anything, even the doctors. Our problem is also that Paula is just 3 years old and nobody had heard of a Degos Disease appearing at this age.
At the university they first take a PE, then checked up Paula’s brain (EKG), her eyes, her major organs by ultra-sound, and they couldn’t find anything more.
At the moment we just ignore her disease. We are at good hope that it is a benigne form of it and will not appear at any time again. She is a very happy girl and we all love her so much.
But we think the more information we can get about her disease the better it is for us and all the other patients.
Many greetings from Offenbach-Bürgel, Germany
Paula, her brother Niklas, mother Christiane and father Steffen
Page last modified on 29 July, 2005
