Talking about ADPKD is a personal decision and may be difficult for your loved one struggling with ADPKD. Not knowing what to say can add to your stress and add difficulty in caring for him/her.

There are many organizations and resources in the PKD community available to help you and your loved one with ADPKD. To learn more and connect with others going through similar experiences, visit the sites below.

Talking about your ADPKD diagnosis and condition is your decision to make. You decide if, when, and to whom you share your story. If you decide to talk about it, do it in a way that feels most comfortable to you.

Take a closer look at ADPKD to better understand this disease.

Learn more about the signs and symptoms to look out for if you have ADPKD.

Review these questions on the importance of kidney size to bring up at your next doctor’s appointment.