Veni, Vidi, Vascie
— Suzanne DePaolis

I recently hit a huge milestone: Eighteen years had passed since my first symptoms of eosinophilic granulomatosis with polyangiitis (EGPA), a type of ANCA-associated vasculitis, began, and it was the 17th anniversary of my diagnosis. My EGPA has been through many stages of growth: sleep-deprived infancy,…

Piglet in the Winnie the Pooh series has a famous line: “It is hard to be brave when you’re only a Very Small Animal.” When I was diagnosed in April 2007 with eosinophilic granulomatosis with polyangiitis (EGPA), formerly known as Churg-Strauss syndrome, it wasn’t…

We all know the children’s book by Dr. Seuss called “Oh, the Places You’ll Go!” After 17 years with ANCA vasculitis, I could write one titled “Oh, the Doctors You’ll See!” Before my journey with ANCA vasculitis, I had two doctors — my primary care physician (PCP)…

As a child, I always used to check out travel and cooking books from my local library. I’d daydream about foreign places and exotic foods and couldn’t wait to see the world. Some might say I had my head in the clouds. Soon after graduating from college, I married and…

Depression is a challenging illness to manage. When I have a depressive spell, it feels like I’m stuck in a cold, gray fog with no way out. No matter what I do, I can’t see past the gloom. For the past two weeks, I’ve been lost in it. Dealing…

I’ve had eosinophilic granulomatosis with polyangiitis (EGPA), a type of ANCA vasculitis, for 17 years. After my diagnosis, I had to change my life and reinvent myself. At the same time, I was grieving my life before EGPA and educating myself about my new normal.

Do you remember when you were in school and a field trip was planned? I remember the excitement these trips would bring. The destination wasn’t important. The special lunch, the new clothes, and the thrill of the unknown excited me. My lunch was full of things I normally wouldn’t eat…

As I was walking around my house today looking at all the accumulated dust bunnies and housework I need to do, I came across my husband’s treasured Kintsugi bowl, and it made me think. In Japan, instead of throwing out broken and battered pottery, the art of Kintsugi is…

What is your diagnosis day? Mine is April 1, 2007. There was irony in finding out I had a life-altering, incurable illness on April Fools’ Day. I accused my doctor of playing a prank on me. I thought he was joking. Before my diagnosis, a few medical professionals…

“You are about to enter another dimension. A dimension not only of sight and sound, but of mind. A journey into a not-so-wondrous land of side effects. … Next stop: the ‘predni-zone.'” I have been living in the “predni-zone” for more than 14 years. In eosinophilic granulomatosis with polyangiitis…

Some days, I wake up and never want to leave the comfort of my bed. I don’t want to get up and struggle through the day. I don’t want to remember that I have eosinophilic granulomatosis with polyangiitis (EGPA), and even simple tasks take more energy than I have.