You're looking for better control of your symptoms and need to know how to make that happen.

“The first thing you try, or even the first five things you try, might not work for you, but eventually, there's going to be something that works and makes you feel better, and you'll get into the rhythm of being able to manage this disorder.”

As you prepare to see your doctor, take these steps.

As you talk to your doctor in person, have a good handle on the questions you want to ask, the game plan, and what information you may need to provide.

Some doctors see me coming with my one-page medical history summary and consider me a "handful" or know-it-all. But you are in the know, because you're the one living it. A good doctor will appreciate when you've come prepared to work together to find a solution and will treat you in a collaborative manner.

Here are some times to speak up.

Once your visit wraps up, take time for post-appointment review and future planning.

Find support. For me, the American Partnership for Eosinophilic Disorders (APFED) has been a crucial part of my EoE journey. A few moms with sick kids started it as a way to support and learn with each other to better educate their doctors, who didn't know much about EoE at that time. APFED has raised awareness of EoE, gotten better training for doctors, funded decades of research, and helped countless people make connections. I've been fortunate to be in that community, and I do a lot of work with them. You can find support groups and resources on their site.

Look into resources and advocacy. APFED has a patient education and outreach conference where they bring together the top doctors and researchers – along with patient advocates, other people with EoE, and their caregivers – and have them speak. Doctors hear about issues and challenges in day-to-day living, and those with EoE learn about new treatment options. It's not only a great opportunity for everyone involved – for me, it's created lifelong friendships.