How I learned to thrive while living with vasculitis

John Stadler poses for a photo at his home. (Photos courtesy of John Stadler)

This is John Stadler’s story:

My journey with vasculitis has been both a challenge and a profound learning experience, filled with emotional ups and downs.

I was diagnosed with microscopic polyangiitis (MPA), a type of vasculitis that causes inflammation in the small blood vessels. My symptoms were classic but terrifying — persistent pneumonia, chronic sinus issues, and red eye patches. Despite multiple visits to the emergency room, I went undiagnosed for three months after we began investigating. When the diagnosis finally came, it was a relief and a shock at the same time.

By then, unfortunately, the disease had already caused significant damage, affecting my kidneys and leading to skin loss. I was referred to a rheumatologist, who started me on prednisone and Rituxan (rituximab), but after eight months, the disease was still not under control. He described me as being fragile and a refractory patient, unresponsive to standard treatments.

After 14 months of struggle, the only remaining treatment option was cyclophosphamide, known by its brand name Cytoxan. Fortunately, this treatment worked, and I’ve been in remission for the past seven years.

The financial and emotional toll of living with such a rare disease was staggering. The first year of treatment alone cost more than $1 million, leaving me isolated, unable to work, and often feeling overwhelmed by the burden. Through this challenging experience, however, I discovered a new way of living — a way to thrive alongside vasculitis, not in spite of it.

I ran multiple support groups for two years, reaching more than 180 vasculitis patients in 13 countries and four continents. I found support from the Zoom calls with these patients. Their courage and resilience helped me cope and gave me invaluable insights into living with the disease. I also built a strong support system of family, friends, and doctors who helped me along the way, and this network has been crucial in my journey.

Stadler takes a photo while at the hospital.

While I know that my MPA could become active again at any time, I’ve learned that it’s possible to live a near-normal life with caution and optimism. Eight years later, I’m still here, and I’m grateful for the lessons I’ve learned about faith, family, and trust, as well as the friendships I’ve made with other vasculitis warriors.

Though there are losses with vasculitis, I believe that over time, unexpected gifts can emerge. For me, those gifts have been the strength to endure, the wisdom to appreciate each day, and the chance to give back by helping others on their journeys. Living with vasculitis is not easy, but I’ve come to realize it’s possible to live a fulfilling life, even in the face of adversity.

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, Instagram, and X for more stories like this one, using the hashtag #ANCASpotlight, or read the full series.