Be You, Be Rare - Column by Brandon Hudgins

“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…

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…

“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.

For many years, I lived with an anxiety-crippled brain from being a self-absorbed endurance athlete who had been diagnosed with granulomatosis with polyangiitis — a form of vasculitis — at a young age. That pain was almost a badge of honor. I had suffered more than most people…

What do you do when life as you know it and as you’ve dreamed about ceases to exist? That was the question I had to answer at 21 years old. Six months before that late-evening “Are you sitting down?” call from two of my doctors, I would’ve never imagined that…