Questions for Your Physician

Any new diagnosis comes with a lot of questions, especially after you get your initial diagnosis.

Through conversations with patients and caregivers, we summarized our list of questions that might be helpful to discuss with your physician, geneticist and/or cardiologist. Please note that this is not comprehensive, but may be useful as a starting point.

  • What does my diagnosis mean for me and my health?
  • How does this affect my family members? Should I get any of them tested for Danon Disease?
  • What other tests do I need? What other specialists should I go see (and when)? Could you refer me to a trusted colleague that specializes in…?
  • What type of care coordination services does your office (group, hospital, health system) provide?
  • How often do I need to have a follow-up appointment?
  • What do I need to look or watch out for? What information do I need to track and how often between visits to help with better management of my care?
  • What does this mean for my kids?
  • What implications does this have if I want to have more kids?