10 Years After My Diagnosis

Wow! After 14 years of searching for answers, 10 years ago, yesterday, I was diagnosed with Wegener’s granulomatosis, a rare and life-threatening disease with no cause, no cure. Since then I have taken life 10-feet-at-a-time and done amazing things: I held the NORD (National Organization of Rare Disorders) Banner on the summit of Mt Everest and at the finish line of the 1000-mile Iditarod. In 2015, NORD awarded me the first-ever Rare Disease Public Awareness Award for my work in rare disease advocacy. Forrest Gump was right, “Life is like a box of chocolates. You never know what you are going to get.” I took what I got and ran with it, literally.