Truth Be Told - a Column by Sarah Jones

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…

Our sweet cat, Sammie Cooper, died suddenly a few weeks ago. So this is a sad column, but it’s also an ode to a particular kind of care partner: the kind with fur. She came to us 13 years ago from a shelter in Tucson, Arizona. We figured she was…

Living with ANCA-associated vasculitis forces us to redefine a lot of things, including our energy, our expectations, and our sense of normal. But one of the most important and sometimes overlooked things we have to redefine is what we consider “good enough.” Because when it comes to our health…

At a recent medical conference, a concept came up that’s worth unpacking for anyone navigating ANCA-associated vasculitis: minimal symptom expression, or MSE. It was presented as a way clinicians assess whether a disease is controlled or in remission. On the surface, it sounds promising — who wouldn’t want…