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 |
