Episode: #2

Guest: Ken Aster

Topic: Carcinoid Heart Disease, Rare Disease Advocacy & Invisible Battle

When a neuroendocrine tumor silently triggers a 'hormone storm,' your heart valves become the collateral damage. How do you lead a business when your body is fighting a war no one can see?

In Episode 2, host Mary Burrell is joined by Ken Aster, Co-Founder of Prosum and a Southern California business leader. Ken’s journey is a masterclass in integrated leadership balancing a high-stakes career with the sudden reality of Carcinoid Heart Disease.

After a neuroendocrine tumor (NET) began damaging his heart valves from the inside out, Ken underwent two transcatheter valve replacements. Today, he pulls talks about the "Invisible Illness" experience looking perfectly healthy to the outside world while navigating a life-threatening medical crisis.

Strategic Insights from This Episode:

The Internal Storm: A breakdown of how hormones cause heart valves to become thick and stiff, and why these symptoms are so often missed.

The "Invisible" Burden: The emotional and physical weight of managing a rare diagnosis while maintaining professional and family responsibilities.

The Advocacy Protocol: Mary and Ken discuss the specific clinical "hard stops"—including the 5-HIAA urine test and NT-proBNP blood test—that every patient needs to secure their own roadmap to care.

Rarity is never an excuse for a missed diagnosis. Tune in to learn how to turn a "random Tuesday" struggle into a strategic fight for your life.

Explore the Whole Picture:

Connect with our Guest: Learn more about Ken’s professional work at ⁠Prosum⁠.

Visit our Website: https://www.maryburrell.com/

Connect with Us: info@maryburrell.com

Resources for Patients & Families:

The Healing NET Foundation: Access the ⁠Medical Hub⁠ for guides on Carcinoid Heart Disease.

NET Research Foundation (NETRF): Comprehensive ⁠Patient Guides⁠ and specialist databases.

LACNETS: Expert ⁠Video Library⁠ on "invisible" symptoms.

Tune in to shift the narrative from fragmented survival to strategic advocacy. Let’s build the bridge the system forgot.

Championing the whole heart—yours, ours and theirs.

#Heart2HeartTalk #CarcinoidHeartDisease #NETCancer #PatientAdvocacy #InvisibleIllness #HeartValveHealth #RareDisease #StructuralHeart