VF in the News

Patti’s Story

Nobody would have blamed VF Board Member Patti if she had given up after being diagnosed with granulomatosis polyangiitis (Wegener’s) 15 years ago. After all, the prognosis was horrible. “They told me this was a disease that middle-aged men usually got and I’d only live two years,” she recalls. “I was 21. It totally changed my life.” But Patti did just the opposite. She took trips to exotic locales, pursued a master’s degree, discovered a second career and got married. Not bad for someone who was given such a limited prognosis!

Roaming The Globe

Patti was in college when she was diagnosed. She had to go part-time and move back in with her folks. She was put on cyclophosphamide and had 20 operations over three years. At 24, she seemed better. “We thought the drugs had put me in remission just as I was finishing my degree.”

Despite the remission, her poor prognosis weighed on Patti and she decided to see the world after graduation. “I thought I should pack in as much as I could,” she says. “I went toIreland for the summer, then to Fiji, New Zealand and Australia. When I developed scleritis [a swelling of the eye] while I was backpacking, I went back on my meds and stayed out there another 9 months. When I look back on it now, I think, ‘How crazy!’”

Pursuing New Paths

Eventually, Patti returned home, but quickly decided she wanted to pursue a master’s degree abroad. She had one surgery before heading off, found a good care team in the UK and switched medication to azathioprine.  She completed her degree in creative writing and spent a short time as the editor of a travel guide. While planning her return to Canada, she took a job with a London,UK law firm. “They specialized in human rights law, and I had the big epiphany that I wanted to work in immigration with refugees and vulnerable individuals,” Patti explains. So back to school she went to complete her law degree and she returned to the same law firm to practice. She has now recently relocated to Canada with her husband, Mike, who is a physician.

Making it Work

Along the way, Patti realized she needed to be an advocate for her own care, to take control, as she puts it, over a chronic disease that feels uncontrollable. “It’s really important to get educated about the disease and be active in your own care,” she says. “Work with your doctors. Ask questions and write down the answers.”

The key is to stay focused on what’s possible. “I’ve learned to adjust and live with this disease,” Patti says. “I accept and accommodate the limitations in a way that allows me to recognize my capabilities. It’s a huge part of who I am, obviously, but it doesn’t define who I am.”

In fact, she says, “I would never wish I didn’t have Wegener’s,” she admits. “Look at how it’s enriched my life by the way it changed my thinking. The disease hasn’t limited me from doing what I wanted.”

Published: September 2012

To read more stories, please visit the Vasculitis Stories landing page.