Truth Be Told — Sarah Jones

Sarah Jones, MPA, MS has 25+ years of experience leading non-profits and health care programs. She has designed programs and led trainings for local, national, and international audiences. She holds two Masters degrees: Masters of Science in Strategic Design Management from Parsons the New School and a Masters in Public Administration (healthcare).

Her life irrevocably changed when diagnosed with EGPA, eosinophilic granulomatosis with polyangiitis. Sarah and her wife bring their shared passion to improving access to treatments, care and provide Hospital Emergency Advocacy & Training kits for rare disease through their nonprofit – Eosinophilic & Rare Disease Cooperative.

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Living with chronic illness has taught me to hold on loosely

Living with a chronic illness like ANCA vasculitis teaches us many things, often lessons we never asked to learn. One of the most powerful lessons I’ve discovered is the importance of holding on loosely — to the good days, the tough days, and everything in between. When I grip…

Sarah Jones

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When our debilitating cognitive challenges aren’t acknowledged

Recently, I was talking with friends about navigating life after an accident that left one of them with post-concussive syndrome. Both are, without question, among the smartest people I know — and I’m not being effusive. Yet that single event transformed their lives in ways that feel profoundly familiar to…

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Preparing for surgery with ANCA vasculitis is a team effort

As I’ve been sharing, I’m preparing for a hip replacement. And, as is often the case with ANCA vasculitis, nothing about this process has been simple or straightforward. After a thoughtful and thorough conversation with the pre-surgery team, we made the decision to move my surgery back. Why should…

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Finding a little light on dark winter days is key with ANCA vasculitis

Winter feels different when you have ANCA vasculitis. That’s especially true for me, because I recently moved to Michigan after living in the desert for 25 years. I’m still learning how to navigate real Midwestern winters and am far from mastering it yet. The shorter days, cold weather, and…

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Starting a new year with ANCA vasculitis

A new year can feel complicated when living with ANCA vasculitis. For us, it’s not a clean slate, but rather a moment for reflection. We look back at what our bodies carried us through and look ahead with the quiet hope that this year might unfold a bit more…

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Sharing with others about vasculitis can strengthen connections

Holidays can be wonderful — full of joy, connection, and tradition. They can also be complicated, especially for those of us living with vasculitis. This season, I was reminded of the importance of sharing openly with the people we love about what this disease means in our day-to-day lives.

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Monitoring our kidney health is crucial with ANCA vasculitis

Living with ANCA vasculitis asks more of us than most people understand. It demands we become experts in our own bodies, pay attention to small shifts, and make decisions that most people never think twice about. And when your kidneys are part of the story, everything can feel even…

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A seasonal reminder to thank the loved ones who walk beside us

As we move through this season of gratitude — along with the stress, pressure, and emotional noise that often comes with the holidays — I find myself reflecting on the people who help us navigate this unpredictable, exhausting, and frequently overwhelming disease that is ANCA-associated vasculitis. Living with…

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In life with vasculitis, surround yourself with people who ‘get it’

I got a COVID-19 vaccine this week. It was the first one I’ve had since going off Rituxan (rituximab), and wow, it kicked my butt. It reminded me just how effective Rituxan is at wiping out the immune system, because without it, my little overactive system went into full overdrive.

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For me, underscheduling is key to living well with chronic illness

One of the guiding principles I’ve come to embrace in my life is something that might sound counterintuitive in our fast-paced world: underscheduling. For most of my life, I’ve been the kind of person who packs my days too full — committing to too many tasks, leaving little margin for…

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Choosing the right Medicare plan when you live with a rare disease

Finding the right Medicare plan can be downright daunting. There are so many options, often with only slight variations in coverage, that it can make your head spin. To make things even more confusing, many plans have nearly identical names. Add in the fact that Medicare itself is evolving —…

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Steroids for vasculitis: The love-hate relationship we never asked for

Remember when the phrase “this is a hamburger on steroids” just meant a ridiculously big burger piled high with toppings? Before I got sick, “on steroids” was just a funny exaggeration. Now that I’m living with ANCA-associated vasculitis, though, that phrase hits differently. Steroids are no longer just something…


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