Suzanne DePaolis: A Patient Experience with Vasculitis

Suzanne DePaolis: A Patient Experience with Vasculitis

2019 Phoenix Patient Conference
Lunch: Patient Experience Story
Suzanne DePaolis
VF Board of Directors

Introduction: Suzanne DePaolis’s 12-year vasculitis experience. 00:27
Background: Back to August 2006—hives and endless coughing. 01:06
April 1, 2007: Officially diagnosed with Churg-Strauss Syndrome (now called EGPA). 01:41
Treatment began: Cytoxan®, methotrexate, Imuran®, CellCept®, high-dose prednisone 02:22
2008: Attended first Vasculitis Foundation conference at the Mayo Clinic; started taking Rituxan®. 02:38
It was time for Suzanne to accept her “new normal,” grieve about her old self and move forward. 03:55
Why does Suzanne feel passionate about supporting the VF? 04:53
Suzanne realizes that she must educate herself and her doctors to get the best care. 05:52
With the help of the Vasculitis Foundation, Suzanne learned to advocate for herself: attend educational symposiums, network with other patients, take notes, bring someone to appointments, and ask questions. 06:39
Remember you have a rare illness and you can’t expect every doctor you see to be an expert; educate yourself and work with your doctor as a team. 09:39
Suzanne appreciates that she has a real “say” in her medical care. 11:11
Overall message: You need to get involved in your own medical care, pick your medical team with thoughtfulness and have at least one go-to doctor who is leading your team. 12:28
Tap into the VF’s resources (library of webinars), read everything you can from research- based websites, ask researchers questions from their studies/articles (look for their emails or institution). 12:59
Challenge your mind, move mentally forward, adjust to any new limitations you may have, get involved with the patient community and the Vasculitis Foundation. 15:10
Conclusion: Get involved with our own well-being and focus on the positive. 16:46