Navigating PVS
Navigating PVS
Podcast Description
Pediatric Pulmonary Vein Stenosis (PVS) is a devastating rare disease. Classified as a congenital heart disease, it affects the entire cardiovascular system and is generally most aggressive in early life.
The road taken by parents is often filled with complications, worry, fear, trauma, endless decisions, fatigue, frustration, the search for answers. And yet, hope. Joy. An appreciation for the little things. Deep gratitude. Faith. Resilience. Strength beyond imagination.
In this podcast, we'll dive into family stories and topics relevant to PVS life.
Podcast Insights
Content Themes
Explores themes of resilience, advocacy, and the emotional journey of parenting a child with PVS, covering specific topics such as caregiving experiences, healthcare system challenges, and the power of community support with episodes like 'Careers, Caregiving & Community' detailing the balance of work and parenting for moms of PVS children, and 'Across the Pond' discussing cross-cultural experiences in managing medical care.
Pediatric Pulmonary Vein Stenosis (PVS) is a devastating rare disease. Classified as a congenital heart disease, it affects the entire cardiovascular system and is generally most aggressive in early life.
The road taken by parents is often filled with complications, worry, fear, trauma, endless decisions, fatigue, frustration, the search for answers. And yet, hope. Joy. An appreciation for the little things. Deep gratitude. Faith. Resilience. Strength beyond imagination.
In this podcast, we’ll dive into family stories and topics relevant to PVS life.
In this episode, Jen Joly speaks with Liz Poe, co-founder of The Lady Josephine Foundation, as they explore the layered and deeply human experience of raising a child with Pulmonary Vein Stenosis (PVS). Jen and Liz discuss the emotional and logistical upheavals of traveling for care, the heartbreak of missing life milestones, navigating developmental therapies, and much more.
As a mother of four, Liz reflects on the everyday tension of being present for all her children — and the intentional ways she and her husband, Ben, kept their family connected, building meaningful bonds for both their PVS warrior and her siblings.
Together, Jen and Liz talk about embracing their own version of “normal” and how building community remains central to Liz and Ben’s mission with The PVS Warriors Foundation, formerly The Lady Josephine Foundation.
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