Hey there, just thought I'd share my recent experience. I was diagnosed 10 years ago with this disease at age 19, so I'd like to think I'm no longer a rookie when it comes to this stuff. But for the past 5 years, I've been having problems with my breathing. Nothing bad at first, just a little extra effort and huffing and puffing to walk around and things like that. My doctors said I had asthma, gave me inhalers that never worked and left it at that. I also felt like I was always coughing up a lot of mucus, really thick nasty stuff that was almost impossible to dislodge. Docs said I just had constant post-nasal drip from allergies and extensive damage to my sinuses. WELL, within the past 3 months it finally got so bad that it started affecting my day-to-day life in a major way. I was tired all the time, couldn't even walk on a flat surface without getting winded...I couldn't even carry on a long conversation without getting short of breath. Every time I breathed in I sounded like a little kid with croup, I was wheezy on inspiration and expiration. I work at a hospital and all of my co-workers said I sounded worse than the people actually coming in through the ER. Finally I found a doctor that listened to me.

They did a CT of my neck and found the subglottic stenosis. I was totally blown away. I've been in "remission" for years now. I haven't needed any meds, my labs have been steady, I haven't had any symptoms of WG besides the shortness of breath and the sinus issues that have been there since nearly day one. It just gave me a really big reminder to NEVER be a complacent party when it comes to this disease. Be your own advocate, don't let doctors explain away your symptoms and try to throw drugs at you without finding the root of the problem first.

I had a balloon dilation with injection of mitomycin-c on Tuesday and was released from the hospital yesterday. The estimates from the CT scan showed a 55% airway blockage but when my doctor went in for the surgery on Tuesday, he said that my airway was only 4mm in diameter when it should have been 14mm. That's freaking crazy! I already feel like I have so much more energy than I did even just a few days ago. I hope that those of you reading this never have to deal with SGS, but if you do, there's absolutely nothing that compares to the first deep breath you're able to take after years of shallow breathing.

To all my fellow Weggies: stay healthy, stay strong, and always always stay vigilant.