Although being diagnosed with vasculitis can feel scary at times, one thing that can help you manage the disease and come to terms with it is talking to other patients. VF Board Member Sara Baird Amodio, MSW, EdD, was diagnosed with eosinophilic granulomatosis with polyangiitis (EGPA, formerly Churg-Strauss syndrome) in 2015.
She wanted to reach out to all those affected by the disease through a podcast series titled, “The Ride by Vasculitis Journey.” The series, which Dr. Amodio started a few months ago, is available through Apple Podcasts and Spotify®. It’s an offshoot of her Facebook site, Vasculitis Journey. Her aim is to do interviews and “field trips” around vasculitis topics. “I’ve done episodes about prednisone, sinus involvement, and most recently, blood draws,” Dr. Amodio explained. “I’ve tried to infuse humor into the podcast, because sometimes you just have to laugh at it all,” she said.
Caregivers and medical professionals can benefit by listening to the podcasts as well. “Vasculitis can be a lonely disease for caregivers, too,” she said. Dr. Amodio plans to discuss mental health, mobility/neuropathy issues, family members’ reactions to the disease and practical tips for getting infusions. All listenership profits will go to the VF. “You listen, you donate,” she said. “It’s just my little way of giving back.”
See what’s playing now at https://bit.ly/38HbhO2.
Author: Nina Silberstein.