Columns

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…

I remember the early days of my vasculitis diagnosis, when high dosages of steroids and chemotherapy robbed me of joy. My physical self was suffering to the extent that my mind and spirit broke with it. For several months, I woke up in the morning and had to sit…

“Hey, how are you doing?” It’s a common question that we use to greet everyone from close friends to the cashier at a local coffee shop. If you are a rare disease patient, you’ve likely encountered this scenario at some point on your journey. Someone may ask this basic…

As I approach the 15-year anniversary of my vasculitis diagnosis, I’ve started to contemplate the lessons that battling this disease has taught me. There are many, though some stand out. As an athletics coach, I’m always looking for ways to learn from experiences. My own coach for my decade-plus…

The first week of February, I turned 35. It was a typical, uneventful adult birthday — especially because it fell on a Monday. I happened to be traveling back from a weekend of out-of-state work, so besides some good wishes from family and friends, there wasn’t a huge celebration. (At…

Living with a rare disease, by its nature, is isolating. According to the National Organization for Rare Disorders, a rare disease is one that affects fewer than 200,000 Americans. There are currently over 7,000 such diseases. I’ve lived with ANCA vasculitis, a subset of autoimmune diseases that affects…

When the world outside of your head becomes overwhelming and you need to cling to something for support, where do you find your center? With vasculitis, that world is an unfamiliar one. It’s full of new challenges, new details a patient is obligated to learn for their own…

“This isn’t the life that I planned, but it’s the life that I got,” an athlete friend of mine recently said as he sipped his latte. Now in his 70s, my friend was reflecting on a life he had worked hard for, but which wasn’t quite what he had imagined.

Those of you who have followed my column for at least a year might recall my annual January tradition, called Hibernation. I treat it as a mental and physical reset, and eagerly look forward to it after the bustle of the holiday season. I began Hibernating in 2016…