In 1994 the idea of supporting patients and explaining vasculitis to public at large came true by founding the VPS, the Vasculitis Support Group, in Bad Bramstedt. Vasculitis had still been a widely unknown autoimmune disease.
These words have been the introduction to this page ever since it went online. Many things have changed since then. The proper title to this page should therefore be rephrased into
II am not a vasculitis-patient myself, I am the woman in the background who looks after this website and the forum. I have been affected by the horrible impacts of this illness in my family, though, and at the turn of the century an idea developed:
If an illness is so rare it will be very hard to find fellow-patients. Communication on how to deal with certain aspects of vasculitis might be an essential part in the treatment/healing-process (if one can call it that, since vasculitis is a chronic illness). Maybe the internet might assist in connecting people. So I created this website.
The intention of the original support-group was to help set up local chapters, to connect patients, to spread the knowledge on vasculitis. The support-group doesn't exist any longer due to many reasons. The website tries to follow the same goals: connect patients spread the knowledge on vasculitis.
Unfortunately the English page is only a sligth "echoe" of the German one. I encourage you to visit the German website, maybe use "good" online-translation-tools, to be able to enjoy all the patients' stories, for example. Just bear in mind - and this is important - that I am not a medical doctor but a laywoman. Therefore I strongly advise to discuss whatever hint or idea you may come across on this site with your docto first!
Birgit Wiedenmann-Naujoks, 20th of October 2019