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. Fifty-seven times I explained my symptoms, only to be told my rash was stress-induced because my father had passed away, or that my blood pressure spikes (220/125) were just emergency room nerves. Fifty-seven times we walked out of an appointment with no real answers at best, and being shamed or belittled at worst.

And then, finally, we met the medical team that listened. They took my symptoms seriously. They ran the right tests. They gave me a name for what had been silently hijacking my life: eosinophilic granulomatosis with polyangiitis (EGPA).

I remember feeling relieved when I was diagnosed. I thought I’d finally be able to take care of an unruly, unexpected illness. Little did I know that it was just the beginning.

I’m glad I didn’t know how hard the journey would be. Truth be told, I’m not sure I would’ve had the strength to begin the journey if I knew how hard it’d be.

Recommended Reading

March 3, 2025 News by Patricia Inacio, PhD

Nucala lowers disease activity, steroid use with EGPA in real world

Sea legs for unexpected swells and storms

As those living with chronic illness know, some days are better than others. The only thing predictable is unpredictability. Navigating vasculitis requires a fierce resilience — sea legs for a storm that never fully settles.

Before my diagnosis, I would’ve considered my sea legs strong and myself well-equipped for this journey. I spent my career building and running national healthcare nonprofits. I have two master’s degrees, one focused in healthcare. I would’ve thought it’d be easy to advocate and navigate accessing care and medication.

Truth be told, though, living with vasculitis is incredibly complicated. I learn something new daily — about the disease, medications, insurance red tape, and advocating for myself in a system that often fails patients like me.

And then there are the emotional changes, from both the disease and medication side effects (in this case, prednisone). Over the past four years, I’ve had many dark nights of the soul, filled with grief, loss, helplessness, and just feeling sick. Chronic illness shifts your identity. It forces you to grieve the life you had while you also try to build a new one.

As I learn to partner with my disease, it hasn’t been all bad. I’ve had times of experiencing a presence and richness in relationships. I’ve found joy in seemingly simple things, such as the evening “sunset drives” we take.

As a part of my column, you’ll hear me reflect on the pain and hard times as well as opportunities for reframing and building new skill sets to live a new life. You’ll hear me talk about not just my experience, but also Pam’s – because she lives this disease by proxy.

I’ll talk about changes in all aspects of life, such as our friendships, relationships, connection to our bodies, our careers, and much more. I won’t pretend my life is yours, or that I know what to do. Instead, I hope the columns generate some new thinking, an exploration of new skills, or just feelings that you’re less alone.

The scene from one of Sarah and Pam’s “sunset drives,” this one at Kitt Peak in the Tohono O’odham Nation, near Tucson, Arizona. (Photo by Sarah Jones)

We couldn’t renovate houses anymore, so …

Pam and I are affectionately known as “SPAM” to our friends (Sarah plus Pam). Over our 30 years together, whenever we see something that needs to be fixed, we figure out a way to make it better — ideally not just for ourselves, but for others as well.

We used to do that through renovating houses, but that’s one thing I can no longer effectively do. Instead, we started renovating systems that desperately needed change.

We now focus our energy on the birth of our advocacy nonprofit, the Eosinophilic & Rare Disease Cooperative. We’ve also been busy distributing HEAT Kits (Hospital Emergency Advocacy and Treatment Kits) for patients who have ANCA vasculitis, myasthenia gravis, and some other rare diseases. We’ve also launched the “Rare Candor” podcast, which can be found on Spotify or Apple Podcasts. Have a listen!

Sarah and Pam’s cats, Muggles Francis, left, and Sammie Cooper, in 2024. (Photo by Sarah Jones)

Before this column was born, Pam and I wrote Community Spotlight articles for Bionews, the parent company of this website. Mine was “Living with EGPA disease is one big game of whack-a-mole,” and Pam’s was “My wife has EGPA; I have EGPA by proxy.”

I’m honored to share with you through this column, and I hope you’ll engage. I hope you’ll see this as an invitation to embrace the good days and hard days — and know you’re not alone. I hope you’ll give voice to the challenge because that’s the only way others can learn what this experience is like. I hope you’ll share your bright moments, because truth be told (that’s my column title, with a banner reflecting that to come soon) — something is alive in each one of us, every day.

And our fur babies would not forgive us if we did not include them in the introduction!

Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.