Hi my name is Shanna and I have been diagnosed with Wegeners for 35 years. Yep I'm a warrior. A mean WG fighting machine. When I was diagnosed my nose was bleeding for hours on end. My hearing was shot. My kidneys were bleeding badly. My appetite was gone. I slept around the clock and the ENT I first saw told my mom I was a spoiled brat and the only reason I was waking her up in the night to tell her my ears hurt so bad was because I wanted to sleep in her bed. FUNNY DOC. I was already in bed with her. So mom left his office went to the phone booth outside and called another doctor and begged them to see me that day. He did, and he could not believe how terrible my ears looked. He said I must be scratching the insides of my ears while I'm sleeping lol had to wear cotton gloves to bed in July in California. Really??? Not my mom but she said ok and agreed to bring me back at end of week to recheck. Guess what they were worse so he called another ENT and asked if I could see him same day. Thank God he said yes and he was the man who saved my life. He admitted me to the hospital did nasal biopsy, and eat tubes and said I have seen tissue like mine in med school one time and I believe this little girl has this disease. He was right from there he appointed a oncologist to start treatment cytoxin and prednisone and in a few days I was eating again but I had had a minor stroke from the trama. I couldn't stand up on my right leg. But in time it got better and so did I. Lots of bumps 5 years on meds 5 years off then again 5 years on 5 years off. Then bactrim came in to my life. 9 year remission yay!!! But 11 months into relapse my bladder bled. So checked the bladder and found a huge tumor. Yep stage 4. Cytoxin exposure. Now I'm 11 year WG free and November is 11 years cancer free. I was in hell fought WG then fought cancer. Huge mess. BUT I'm ok. I'm healthy I work full time I'm an ultrasound tech and I have an education business too. My only new development is my airway. One of my relapses did a pretty good job on my airway and bronchials. I'm hoping it's just scar and I can get dilation and it's not relapse. It's great to see all of you on here I have NEVER met a WG patient in 35 years of having it it's been kinda lonely. I wish you all well I hope you battle outcomes work out well for all of you. 💜