Hi,
Dave here. I was born in 1956, diagnosed in 1994, and still alive today on 10/28/2013. I was told wegeners is an orphan disease, meaning so few people are diagnosed that there are no treatments or active research studies. After losing my career, my marriage, my health care insurance and most of my sanity I managed to survive until my SS application was approved. Then I went back to the medical profession and was told my wegeners was in remission, evidently since I had lived beyond the expected survival period. I followed the best advice I could find on the internet at the time of the diagnosis: get plenty of rest and don't over do it when you are having "good days".

Other than that, all I did was move out of the city (and away from a job located close to pollution spewing industry). To this day, I do not know for sure if I actually had wegeners or that my immune system was only reacting to high pollution. There must be some way to know for sure?