There are smart steps you can take to be an active and engaged part of your own care. The more prepared you are for your first appointment, the more effective your visit will be. These are the tips I recommend for getting ready.

“Getting an EoE diagnosis may feel scary up front, but it does get better over time. And compared to 20 years ago, there are incredible resources and tools out there to help you manage your disease.”

Start by giving yourself an EoE primer. How much do you know about your EoE? Find science-backed sites with more information. Learn what you can so you know what questions to ask your doctor about your personal case. Two great sources are the American Partnership for Eosinophilic Disorders (APFED) and the American Gastroenterological Association's GI Patient Center.

Here are more tips to help you get ready for your appointment.

Your doctor is there for you, but their time isn't unlimited. Use this face-to-face visit to your advantage by coming in prepared. Think through the questions you'll ask, as well as what answers you'll need to have at the ready.

It's important to let your care team know when you have concerns or questions, or you're confused.

Once you've finished your appointment and had your questions answered, it's time to organize your thoughts and plan for next steps. Here are some post-visit tips I recommend.

Schedule your next visit. As you plan treatment and monitor your progress, you'll need follow-up care. Your doctor should let you know when the next appointment needs to be. Make sure to put it on your calendar.

Summarize your visit notes. If you brought an appointment buddy, combine notes from the appointment and consider starting a binder or notebook you can go back and refer to as you start your EoE management.

Find an EoE community. I was diagnosed at age 2 and have always found it helpful when I meet other people who get it and know what it's like to live with EoE day to day. Talking through how EoE impacts my life has been an important outlet for me. You can find people through social media or through national organizations like APFED.

Consider your mindset. It's natural to focus on the "why me" aspect of your diagnosis, but it can be really helpful to switch your mindset toward the future. Now that you have a name for what you're dealing with, you can think about treatment options and work toward a plan to make sure you're feeling better.