My name is Kelli. It started with severe eye and ear pain. I saw my pediatrician a few times, and he insisted it was nothing more than a sinus infection. However, that’s when I developed about every symptom you can have with Wegener’s, and then my pediatrician finally sent me to the emergency room. I saw a rheumatologist and pulmonologist before being correctly diagnosed. I was in the hospital three different times during a 6-week period, totaling 25 days. Bottom line, it took close to 3 months before diagnosis; therefore, a lot of damage was done to my sinuses. My lungs suffered as well, and kidney problems followed.
After being diagnosed with Wegener’s Granulomatosis (WG) on March 18, 2008, I knew I had to have a “new normal” for my life. I was just so thankful and grateful to still be alive that the treatments, adverse effects, and being “puffy” didn’t get the best of me. As of now, I am still having issues and repercussions from WG, but will continue to fight until remission is reached. January 2009 was my first airway opening due to subglottic stenosis and a subglottic scar. My airway was opened twice more in 2010 (the January opening did not hold so the procedure was repeated in March) and my fourth airway opening was just done in March 2011. I am still dealing with active WG in my sinuses and recently had endoscopic sinus surgery. My nose gets so unbelievably dry, that it results in frequent nosebleeds, lots of crusting, and facial pain almost every day.
I truly believe everything happens for a reason, everyone has a story, and that God has a purpose for this. The VF has been a great support system and I’ve appeared in two of the VF newsletters. Raising awareness is very important to me, and I educate people through Facebook, PowerPoint presentations, our local newspaper, and talking to people directly about WG. Helping others through my journey is what it’s all about!
Published: May 2011
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