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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Nobody warned me about oral health problems related to vasculitis

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…

Sarah Jones

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I often can’t breathe automatically due to lung issues and AAV

Before ANCA-associated vasculitis (AAV), I never gave breathing a second thought. It was automatic, like blinking or walking across a room. Then came a day when I walked from my bedroom to the kitchen and couldn’t breathe. There were actually many days like this, but I will never forget…

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Let’s do away with pity parties and start practicing self-compassion

If I could erase one term from the vocabulary of people affected by chronic or rare diseases like ANCA vasculitis, it would be “pity party,” closely followed by “sorry for myself.” Those words are cruel. Not dramatic. Not motivating. Cruel. When we say them to ourselves, we’re not being…

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Sharing what’s on your mind can ease loneliness in life with vasculitis

Some of the best things I’ve learned about living with ANCA vasculitis didn’t come from a journal article, a conference slide deck, or even a clinic visit. They came from you. From conversations. From comments. From private, patient-focused Facebook groups — messages that started with, “Does anyone else …”…

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What a hip replacement taught me about bone health and vasculitis

By the time this column is published, I’ll be a couple of weeks into recovering from a hip replacement. I am writing it in advance because I’m fairly certain I won’t have the wherewithal to write coherently after the surgery. I never imagined I’d need a hip replacement at this…

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A valentine for the people who show up in our lives with ANCA vasculitis

Valentine’s Day usually comes with a lot of noise. Flowers. Chocolate. Big romantic gestures. All of that is fine, but I want to offer a slightly different Valentine’s idea: one that feels especially right for those of us living with ANCA vasculitis. This year, let’s send valentines to the…

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Preparing for hip replacement surgery with ANCA vasculitis

A hip replacement is not as “simple” as some people might portray it. As many of you know, I recently had a total hip replacement. Before the surgery, people kept saying things like, “Oh, those are easy!” or “My neighbor was walking in a week!” And every time, I…

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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…

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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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