Some came to the conference, one of more than 15 now held by the Vasculitis Foundation, to network and find mutual support. Some came to hear specific talks and solicit advice about their symptoms and care. And some came to deliver the message to rheumatologists that far more is needed to help support patients through what can still be an arduous and life-threatening ordeal. Just as attendees learned from the rheumatologists, the doctors received a firsthand look at patients’ main concerns.
In Search of Support & Community
Kami Schmidt, an attendee from Pine City, Minn., believes she’s had microscopic polyangiitis (MPA) for years. She remembers getting pneumonia nearly every fall, like clockwork, and experiencing frequent sinus issues. Her doctors always just knocked the infections back with prednisone—one reason she believes she wasn’t diagnosed sooner. “There does need to be more awareness,” she said in an interview with TR.
After nearly dying in 2009, Ms. Schmidt was finally diagnosed via a bronchoscopy and kidney biopsy and treated with intravenous prednisone, cyclophosphamide and plasmapheresis. “I told my doctor, ‘If I live through this, I want to do something to help other people going through this,’” recalled Ms. Schmidt.