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It has now been a year since her diagnosis. The first few months were very rough, as they tried to get both the Wegener's and Goodpasture's under control. The treatments are very similar (the are...

The Vasculitis Foundation and NIH will be posting or linking to the videos recorded at most of the sessions. It won't provide the benefits of being there and getting to talk to the specialists after...

Thanks for the recommendation, Sangye. As soon as she was diagnosed, we quickly researched both her diseases and knew that Johns Hopkins was the place to go, but her doctors said that she needed to...

Where were you hospitalized? Did they ultimately determine that you did not have Goodpasture's? Did you have anti-GBM antibodies?

She has the crusty (and sometimes bloody) nose, weakness, low sat rate (on 3 liters of oxygen full-time), kidney failure (on dialysis) and a few other symptoms. She had 13 sessions of plasmapheresis...

I am attending the symposium in Long Beach. My mom definitely has both. ANCA positive and anti-GBM antibodies over 100 before plasmapheresis. It is rare to have both, but there are other...

Do you recommend anyone in particular at JH?

Anyone have both Goodpasture's Syndrome and Wegener's?

She is seeing Dr. Christopher Wise, a rheumatologist in Richmond, VA. Should we seek another opinion? She was in the hospital for about 6 weeks and is still quite ill

Anyone have both Wegener's and Goodpasture's Syndrome? My mom has both and it is hard to tell which is responding to meds or if either is going into remission.