The wild ride of my ANCA-associated vasculitis diagnosis

Being diagnosed with a rare disease can be a long and lonely process

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by Sara Amodio |

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I seriously did not have time for this. I did not have time to get sick. Not now.

Those were my thoughts when I finally received a diagnosis of eosinophilic granulomatosis with polyangiitis, or EGPA, during the busy holiday season in late 2015. I had my kids’ holiday concerts to prepare for, client reports to do, presents to buy, and a looming trip to Disney World we had promised the kids. But my body had other plans.

Truth be told, I really should have seen it coming. I had been feeling terrible for a couple years, but I had always chalked it up to either the petri dish environment of being the principal at an elementary school or the stress of starting my own private practice. The symptoms were legion: strange skin symptoms, adult-onset asthma that caused interminable coughing fits, searing gut pain, burning sinus pressure, numbness in my feet, and fatigue, fatigue, and more fatigue. The symptoms kept piling up, and I felt like I was falling apart.

Until finally, I had enough.

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I remember sitting in my car on a beautiful October afternoon under Colorado’s infamous bluebird sky. As I waited for my kids to get out of school, I started having gut pain, which meant that a weird rash would soon break out on my arms and face. I worried that my kids would, yet again, see their mom in pain and ask nervously if I was OK.

Call it divine intervention or whatever, but it occurred to me at that moment that maybe it was some strange allergic reaction, and perhaps I should make an appointment with an allergist. My friend had recently told me about her daughter’s incredible allergist, and I thought, “What do I have to lose?”

A couple weeks later, I was curled up in pain on a paper-clad observation table when the doctor came in. All I remember saying was, “Help me.”

After a lengthy intake, the doctor detailed her next steps: a referral to a gastroenterologist for a biopsy, a lab order for an anti-neutrophil cytoplasmic autoantibody (ANCA) test, and strict orders not to take any form of steroids until the lab work was completed. She was starting to put it all together.

After a whirlwind of appointments and tests over the next couple months, I received the call delivering my diagnosis during that busy holiday season. Initially, I thought that, despite it seeming a bit serious, I could probably just take a pill for it. One and done, if you will. Wow, was I mistaken. Little did I know that it was only the beginning of the wild ride of living with ANCA-positive EGPA, a rare form of ANCA-associated vasculitis (AAV).

Coming to grips with ANCA

As I began to understand my disease more fully and start the initial steps to tamp down the raging symptoms, the enormity of the diagnosis became clearer. Because EGPA is so rare, I had to become my own expert. Words like “chronic” and “systemic” kept popping up in my research. I soon realized that there are both good and not-so-good sources for information about EGPA. Both were few and far between.

Many doctors I encountered during those first few months after diagnosis had never seen a patient with EGPA. They joked that they vaguely remembered a slide in some PowerPoint presentation they’d seen in medical school. I was completely overwhelmed and felt very alone.

Slowly, though, I began to find groups of AAV patients on various social media sites and nervously started to ask questions. The result was that I had found my tribe. Others like me, going through similar things, were out there! They were taking the same harsh drugs I was! They also had “‘roid” rage!

We shared with each other our successes and disappointments. I learned from them how to find doctors who could best help me. By reading their stories, I learned what life would be like with a chronic, life-altering disease. Most importantly, I learned that rare does not mean alone.

My goal in sharing my experiences with AAV is to let you, the reader, know that you are not alone, either. Living with AAV diseases can be tough, frustrating, and scary. Sometimes I feel like I have a handle on things and sometimes I don’t. Either way, I plan to be authentic and genuine when I describe the wild ride that is AAV. And while the ride may be wild, it’s also best experienced together.

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.