Be proactive. Become an expert on your particular diagnosis. Cultivate curiosity. Read everything you can to learn about what’s known about your particular condition. Do searches on Google Scholar and PubMed to identify the main authors. You don’t need to understand the scientific papers. Be the expert on your body in order to give your doctors information that will help them diagnose and treat you. Find the best healthcare team by going to the academic medical center nearest you; if you are not helped there, go to one of the centers on my list at