Even though a team of seven doctors was caring for her at the time, Ms. Schmidt lacked a patient advocate or go-to person to ask her many questions. She decided to launch a support group “so people aren’t alone” and formed the East Central Minnesota Vasculitis Support Group, which regularly attracts more than 30 people to its quarterly meetings.
Ms. Schmidt traveled to the conference to report back to her group on the latest studies and treatment options. “I’m happy to see that there’s a lot of research,” she said. She also had high praise for the conference’s emphasis on education, empowerment and networking. “I think it’s great they connect people with vasculitis—people yearn for this. To have all of these people together, it’s amazing,” she said, looking around the room.
Sitting at the same table, Rosemary Brechtelsbauer told TR that she came to the conference from a nearby suburb to hear about new drug trials targeting her own rare condition, eosinophilic granulomatosis with polyangiitis (EGPA), as well as other forms of vasculitis. “I like to know everything,” she said. “I want to know what’s going on.”