Truth Be Told
— Sarah Jones

Most GPS apps have a feature that I’ve come to think of as a metaphor for my life with eosinophilic granulomatosis with polyangiitis (EGPA). When something changes — traffic, a road closure, a wrong turn — the app doesn’t panic. It doesn’t apologize. It simply says: “Recalculating.” That is,…

If you’re in the U.S., here is a small experiment you can run right now: Google the price of any prescription drug. Whatever number comes back is the list price, and it’s worth knowing that almost no one actually pays that amount. Think of it like the sticker price on…

Of all the things I expected ANCA vasculitis to take from me, my mouth was not on the list. But here we are. My gums are perpetually inflamed and, more often than not, sore. I figured I was doing something wrong because my doctors didn’t acknowledge how the disease…

Has the following scenario ever happened to you? Test results come back normal, but you know something’s off. Personally, I’ve learned how to feel the inflammation and disease in my body. I know when it is active, even if lab results don’t tell that story. Most people would consider normal test…

I still remember sitting with my wife as we tried to wrap our heads around my diagnosis of eosinophilic granulomatosis with polyangiitis. We were relieved to finally have an answer, but the complicated journey was just beginning. I see this time and time again in private Facebook groups for…

Those of us with ANCA vasculitis can find ourselves in the hospital for a variety of reasons. If you’re on Medicare, there is a little-known caveat related to hospitalizations that are coded as outpatient for observation. I learned this the hard way and want to be sure you know…

Every time a new ANCA vasculitis clinical trial is announced, I do the same little dance. I read the headline, feel a flicker of hope, and then scroll down to the eligibility criteria looking for one acronym: EGPA, which stands for “eosinophilic granulomatosis with polyangiitis.” Most of the time,…

A few weeks ago, I was on a support group call for people with eosinophilic granulomatosis with polyangiitis when someone described how much it meant to be able to talk with other people in the same situation, and my friend responded, “It’s the power of many.” I have not been…

Nobody hands you a manual when you’re diagnosed with ANCA vasculitis. What you get instead, if you’re lucky, is time to figure it out. And with that comes wisdom, tricks, and some version of sea legs for the uneven ride. It takes time to figure out what your body…

On a Wednesday, I received a call that my surgeon wanted to move up my cervical spinal fusion because the damage from my bones pressing into my spinal cord was too serious to wait. It would take place less than 48 hours later, on that Friday. But when Friday morning…

I was doing the thing I swore I wouldn’t do at 8 a.m. — scrolling through a support group message board before having my morning coffee — when a post stopped me cold. A woman named Beth wrote that the U.S. Department of Veterans Affairs (VA) had just decided her…