Navigating life on the up-and-down journey that’s vasculitis

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by BNS Staff |

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Five photos showing people affected by ANCA vasculitis, who are sharing their real-life stories during ANCA Vasculitis Awareness Month, are hung with clips on a string above the words 'Community Spotlight.'

Kathy Olevsky prepares to record a Vasculitis Foundation medical webinar in her office. (Photos courtesy of Kathy Olevsky)

This is Kathy Olevsky’s story:

In late 2008, I was diagnosed with microscopic polyangiitis or MPA. It plunged me into a 21-day hospital stay, including time in intensive care, filled with tests, medications, and procedures.

Olevsky standing atop the Matterhorn during a July 2023 visit to Switzerland.

Leaving the hospital marked the beginning of a journey into the autoimmune disease world, one that nobody in my circle knew existed. Memories include my 16-year-old daughter guiding me through her college applications and financial aid forms, while I struggled to focus amid a medication haze. My 24-year-old son had to step up as CEO of our family business, a responsibility we weren’t prepared for.

The first six years of disease treatment were filled with such moments. My doctors lacked access to newer medications, so I endured various forms of chemotherapy and high steroid doses in a bid to stabilize my condition and protect my kidneys.

Eventually, I found medications that suited me, entering a long-term and treatment-free remission, a status my doctor labeled “LTROT” after so many visits and evaluations.

But I struggled to reclaim the person I was before my diagnosis at age 50. It took five years to realize that person was gone.

My background as a fitness professional and martial artist were invaluable. Hiring a personal trainer, I learned the importance of patience and pacing in rebuilding strength. No longer able to push at my old pace, I learned a new rhythm, one that allowed for progress without risking setbacks.

Olevsky at age 50, poses for a photo during the year her disease was diagnosed.

To my fellow vasculitis warriors, I offer these thoughts: Your memories of bad times are often not what others remember. My children and husband don’t recall the moments I thought defined me as an awful mother, wife, or businessperson. They remember the resilience, love, and small victories we celebrated together.

There will always be ups and downs, but the key is to persevere and adapt. Despite many years in remission, a flare in the fall of 2022 required six months of treatment. It was a challenging time, filled with uncertainty and fear. Yet, by April, I had completed treatment, and by July I found myself standing atop the Matterhorn in Switzerland.

At that moment, surrounded by the majesty of the mountains, I realized that life is still beautiful. It’s about creating new memories and cherishing the goodness that exists despite the struggles.

To all of you facing the uncertainties of vasculitis, hold onto hope, embrace the journey, and never forget the resilience that lies within you.

In recognition of Vasculitis Awareness Month in May, the ANCA Vasculitis Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by vasculitis, written in their own words. Follow us on Facebook and Instagram for more stories like this, using the hashtag #ANCASpotlight, or read the full series