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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It’s OK to feel frustrated by the unpredictability of life with vasculitis

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…

Sarah Jones

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The medication that’s changed my journey with EGPA disease

Note: This column describes the author’s own experiences with Fasenra (benralizumab). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Are you on Instagram? I’ll admit it — my wife and I can’t stop watching those silly little dances. Our favorite?…

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We can carry forward the momentum from awareness month

As I look back on Vasculitis Awareness Month in May, I find myself grappling with a complex wave of emotions. On one hand, there’s undeniable excitement and a spark of validation. For once, the spotlight is on our disease, which usually lurks in the shadows. ANCA-associated vasculitis is a…

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With vasculitis, emotional healing is up to me, not my care partner

Spoiler alert: I think, in the end, only the person living with a chronic disease can soothe themselves. The other day, my wife, Pam, and I had one of our car conversations. You know the kind — where the road ahead somehow makes it easier to see things clearly. Sometimes…

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We all have different approaches to living with chronic illness

I’ve come to realize that there is no single way to live with a chronic illness like ANCA vasculitis. There are countless realities and processes people use to navigate such a life-altering diagnosis. Some dive into research, anchoring themselves in science, facts, and clinical studies, finding comfort in…

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The importance of celebrating small wins in life with vasculitis

What is it with us humans? It is a curious phenomenon that we generally deem situations, interactions, gifts, successes, or help from others as valuable only if they’re epic — dismissing the baby steps, small successes, and brief connections as if they’re not substantial enough to warrant celebration. Sometimes we’re…

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What a difference a day makes with a rare disease

We’ve all heard the phrase “what a difference a day makes.” That couldn’t be more accurate for someone with vasculitis or any other chronic disease. Some days can feel as if they last for weeks or months, or never seem to end. Other days fly by in a minute. For…

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We must avoid comparing ourselves with others with ANCA vasculitis

It’s hard not to compare ourselves with other people living with ANCA vasculitis who have benefited from medications and treatments. Comparing is human nature — and the cause of much suffering. It’s particularly hard when we’re experiencing a flare or side effects of our tough medication regimens. Seeing people…

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Adjusting to a brand new terrain after my EGPA diagnosis

This February marked four years since the day my world — our world — changed forever. For the previous 11 months, my wife, Pam Squires, and I had been stuck in a relentless loop, a medical maze with no clear answers. Fifty-seven different trips to the hospital or doctor’s office.


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