Jill, a high school superintendent living with recurrent pericarditis
The importance of being your best advocate
With a rare disease like recurrent pericarditis, it’s especially important that you communicate with your doctor about how the disease is affecting your life and what you need from treatment and from your care team.
These results from a Harris Poll survey of 125 people living with recurrent pericarditis showed that while the disease had a significant impact on their lives, both physically and emotionally, there is a need for better communication between doctors and their patients with recurrent pericarditis.
Pericarditis survey results: quality of communication
Respondents said they had to go to an average of 3 doctors before being diagnosed.
88% want their doctor to ask more questions about their recurrent pericarditis symptoms and/or flares.
85% often feel they “fall through the cracks.”
90% would like a treatment that prevents future flares better than their current treatment.
This survey was conducted online within the United States by The Harris Poll on behalf of Kiniksa Pharmaceuticals from May 4 to June 1, 2023, among 125 US adults ages 18+ who have been diagnosed with recurrent pericarditis and are not currently pregnant or breastfeeding and have never used/are not currently using an IL-1 antagonist. The sampling precision of Harris online polls is measured by using a Bayesian credible interval. For this study, the sample data are accurate to within ±8.7 percentage points using a 95% confidence level.
Quote from Carly Pearce
"If your body doesn't feel right, listen to it and don't take no for an answer."
Last updated: 04/30/25
The content on this page has been written and approved by Kiniksa Pharmaceuticals.