145: Genetic Arrhythmogenic Cardiomyopathy: Sarah and Leslie's Story

Some conditions hide in your genes, without any symptoms. One of these conditions is genetic arrhythmogenic cardiomyopathy, an inherited condition that can lead to sudden cardiac arrest — even if you feel completely fine.

In this episode, Sarah and Leslie talk about their shared diagnosis of FLNC cardiomyopathy — from how this gene mutation affects the function of the heart to how they're managing this rare condition. You'll hear how Leslie's ICD has saved her life more than once, how it feels to be shocked back to life, and the resilience that's helped them move forward.

This is a raw, real, emotional episode about living with a genetic heart condition. Tune in to learn the signs to watch for, when to get tested, and where to find support!

Topics discussed in this episode:

• What is genetic arrhythmogenic cardiomyopathy?
• How FLNC related ACM differs from other cardiomyopathies
• Common symptoms and why some people are diagnosed too late
• Treatment and lifestyle management
• How Sarah and Leslie finally got diagnosed
• Leslie’s first cardiac arrest and its impact
• How Sarah is processing her diagnosis
• What it feels like to be shocked by your ICD
• Types of ICDs: transvenous, SICD, and EV-ICD
• Mental and emotional recovery post-cardiac arrest
• The WomenHeart organization

Find support or volunteer with WomenHeart:

https://www.womenheart.org/

Mentioned in this episode:

Voices in Nursing

Check out the Voices in Nursing Podcast here: https://www.aacn.org/education/podcast-series/voices-in-nursing

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Listen to the In The Heart of Care Podcast

https://link.cohostpodcasting.com/6598429e-e927-45b0-9b57-7dd34a09d803?d=seASyqjs7