Starting the Conversation About ADPKD


ADPKD can cause stress for families, especially because it is passed down from your parents. Despite this, many experts suggest that you share information about your diagnosis, especially with adult family members. This gives them the opportunity to learn about what’s going on with you, and to become educated about the condition.

Discuss your daily struggles and triumphs with people you trust. They can help you make decisions about your treatment options. They can also help you make healthy lifestyle changes that may help you keep your kidneys healthy.

It is important to talk about your ADPKD diagnosis for a number of reasons:

  1. Early diagnosis can mean better disease management by treating high blood pressure and making lifestyle changes to protect kidney function
  2. Early treatment may help manage disease-related complications
  3. Genetic counseling and genetic testing can be helpful for couples planning a family
  4. Early screening and diagnosis may make it possible to continue leading an active, productive life for longer
  5. Early diagnosis may lead to early screening of family members
  6. Learning about ADPKD and having an open discussion about its implications may help families reduce fear and tension

Having the discussion with children about an ADPKD diagnosis can be more complicated. Will they be able to handle and understand what your diagnosis means to their own health? If they have questions, answer them simply and honestly.

Fact or Fiction?

Fact or Fiction?

In ADPKD, cysts damage your kidneys, making it harder for the kidneys to work.

Fact or Fiction?

ADPKD Can be diagnosed by ultrasound.

Fact or Fiction?

If I feel fine, then my ADPKD is not progressing.