The TBRS Community is excited to release a new Cardiac Care & Surveillance Fact Sheet, designed to help individuals with Tatton Brown Rahman Syndrome (TBRS), their families, and healthcare providers understand the critical cardiac concerns associated with the condition. While TBRS is still a relatively new diagnosis, emerging research and our own TBRS Patient Registry data indicate that more than half of individuals with TBRS have a diagnosed heart condition or structural abnormality. Most notably, recent studies have highlighted aortic root dilation as a key concern, with some cases progressing rapidly and even requiring emergency surgery. This fact sheet compiles the latest research findings and expert recommendations to support better cardiac monitoring and care for those affected by TBRS.
The fact sheet emphasizes the importance of routine cardiovascular surveillance, including baseline and follow-up echocardiograms to track aortic dilation and other potential heart conditions. Given the evolving understanding of TBRS-related cardiac risks, we strongly encourage individuals with TBRS to consult with a cardiologist for regular monitoring. Our resource also provides insights from the latest studies and guidance on integrating cardiac surveillance into long-term care plans.
We are committed to keeping our community informed as research progresses. This fact sheet is just one way we aim to empower TBRS families and clinicians with the knowledge they need to proactively manage cardiac risks.
Download the resource today and learn more about recommended screenings!
