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Discussion Questions - Share Your Experiences
Topic 1: Genetic Cardiomyopathies Symptoms & Daily Impacts
- Of all the symptoms and health effects of Genetic Cardiomyopathy, which symptoms have the most significant impact on you or your loved one’s life?
- How does Genetic Cardiomyopathy affect you or your loved one on your best and worst days? Describe your or your loved one’s best days and worst days.
- How have you or your loved one’s symptoms changed over time? How has the ability to cope with the symptoms changed over time?
- Are there specific activities that are important to you or your loved one that you/they cannot do at all or as fully because of Genetic Cardiomyopathy?
- What do you fear the most as you or your loved one gets older? What worries you most about your or your loved one’s condition?
Topic 2: Perspective on Current and Future Approaches to Treatment
- What are you currently doing to manage your or your loved one’s Genetic Cardiomyopathy symptoms?
- How effectively do these treatments address the most significant symptoms and health effects of your or your loved one’s Genetic Cardiomyopathy?
- What are the most significant downsides to your or your loved one’s current treatments and how do they affect daily life? (Examples may include bothersome side effects, hospital visits, etc.)
- Short of a complete cure, what specific things would you look for in a new treatment for Genetic Cardiomyopathy? What factors would be important in deciding whether to participate in a new research trial?