Self-Advocacy Resources

“I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me.”
– Maya Angelou


Being a self-advocate truly stems from being on one’s own side. As Chiarians, we are all too familiar with the obstacles and difficulties we face in finding the answers, help, and care we need. Early on, we are in for a rude awakening when we realize most of our doctors and health care providers are poorly educated and ill-equipped to help us. Amongst doctors, even the experts themselves, no full agreements exist concerning Chiari and comorbidities; including definition of Chiari, cause(s), appropriate treatments, surgical techniques, and standards of care. We soon learn how true the quote above from Maya Angelou is and how it is going to be up to us to forge the path ahead. Here at Chiari Bridges, we are eager to help empower you to become the best advocate you can be for yourself, your loved ones, and others like you! Thank you for your patience as we grow and please be sure to stay tuned to this page for more advocacy information, articles, and resources coming soon. Here we grow!

Bridges are built as a means to assist people in getting over the things that obstruct their path. We are constantly facing obstacles when it comes to our health, so we decided to build a bridge! Chiari Bridges is a non-profit network built by Chiarians for Chiarians. Our goal is to provide information, substantiated by published studies, in a way that is easy to understand. We encourage readers, to not only read our articles, but look up every study for themselves and read that too. Print it out and sit down with a highlighter; read it as many times as necessary until you understand; then use it to talk to your doctors. Our doctors are under no obligation to read our articles, but they should be willing to read officially published studies from journals, especially those specific to their profession. As many of our authors are patients as well, all authors sharing original pieces will be writing under pseudo-ghost names, to protect them from being black-listed by their doctors. Chiari Bridges is not affiliated with any physician or medical group. You should in no way use this site as a replacement for diagnosis, treatment, or medical from a qualified medical professional. The information provided on our website is strictly for educational purposes, in order to help further the understanding of Chiari, and its associated conditions. Our goal is to share our collective experiences and the information we have gathered, with those in need of answers, that it may increase your knowledge and guide you in conversations with your doctors.