Being prepared can be a source of strength as you manage PK deficiency. Keeping track of goals, obstacles, and questions can help make sure you and your healthcare team come up with the right plan.
Consider the steps below and download the Doctor Discussion Guide for more tips on preparing for your next appointment.
Step 1: Get organized
If you haven’t been keeping track of your condition in a journal, a good place to start is to gather any information you may have, such as medical histories.
Step 2: Talk about daily life
Talking in detail about your life with PK deficiency can help your healthcare team get a better idea of how you feel.
Step 3: Make connections
Using what you’ve learned, talk to your doctor. Monitoring frequency and management strategies can vary from person to person, so discussing your specific situation will help when building a treatment plan.
Step 4: Advocate for yourself
When discussing support options, it can be helpful to mention the methods you’ve learned about in your own research. Consider sharing a resource with your physician and ask any questions you have about its content.
Step 5: Set goals
Be open about the plans you have for the future. Think about what you want to do next, and ask your healthcare team if they can help you get there.
PK deficiency is rare, so some doctors may not be familiar with the condition. Knowing what questions to ask and examples to include will help your doctor better understand your condition.
I ultimately found a physician willing to work with me; one who saw me as a person and who read the resources I shared with them.