Why Voices Like Kat’s Matter: A Journey with LQTS
Kathryn, better known as Kat, has a journey with Long QT Syndrome (LQTS) that is marked by persistence, discovery, and ultimately, hope.
Her story begins in the 1970s, as a teenager facing unexplained fainting spells. These episodes were often brushed off as stress or low blood sugar. Even a thorough neurological evaluation at the Mayo Clinic during her college years failed to uncover the true cause, since cardiac origins were never considered.
It would be decades before the true nature of Kat’s condition came to light.
Ironically, it was her youngest daughter’s parallel struggle that finally brought answers. When her daughter began experiencing dizzy spells and blackouts as a teenager, the family found themselves repeating the same frustrating path: inconclusive neurological tests and persistent uncertainty. The turning point came when an emergency room physician ordered a 12-lead electrocardiogram (ECG), which revealed a prolonged QT interval.
The diagnosis of LQTS Type 2 brought both clarity and complexity.
Genetic testing confirmed that both of her daughters had inherited the same KCNH2 mutation. While the news answered years of questions, it also brought new responsibilities. Kat educated herself about the disorder, a condition that affects the heart’s electrical system and is especially sensitive to sudden noises or surges of emotion.
Armed with this knowledge, Kat became an advocate for her daughters’ well-being and her own, learning to navigate the risks of everyday life. She took care to avoid medications known to prolong the QT interval, educated her family about potential triggers, and put emergency protocols in place. The stress of managing a genetic heart condition within her family placed significant strain on her marriage. Ultimately, Kat made the difficult decision to leave the relationship, understanding that prioritizing her own health and stability was essential for her continued resilience.
Not long after, Kat underwent surgery to receive an implantable cardioverter defibrillator (ICD), a device designed to detect and correct dangerous heart rhythms. The importance of this intervention became clear when, during a particularly stressful period following her divorce, Kat received thirteen appropriate shocks from her device, saving her life. These events reinforced for her the critical role of listening to one’s body, advocating for comprehensive medical care, and maintaining a vigilant, supportive environment.
Kat’s experience led her to discover a new sense of purpose.
Drawing from her journey, she reinvented her professional life, helping others navigate times of transition and emotional upheaval. Through specialized training in HeartMath, she blended practical strategies with emotional insight, supporting individuals facing crisis, loss, or major change. Her work became an extension of her own healing; a way to offer clarity and comfort to those finding their way through chaos.
Kat’s daughters have also followed in her footsteps, becoming passionate advocates and supporting others who live with SADS conditions. The sudden loss of Kat's father to cardiac arrest deepened the family’s commitment to early detection, informed decision-making, and the courage to act on what they had learned.
Kat’s story highlights how far we’ve come in understanding Long QT Syndrome—and how far we still have to go. When her symptoms first appeared, answers were scarce and support even scarcer. Over time, she became not just a patient, but a voice: learning, connecting, and helping others make sense of what she once had to face alone. Her experience is a reminder that progress in medicine doesn’t happen in isolation—it needs people like Kat to keep pushing it forward.
Paving the Way for the Future
It’s voices like Kathryn’s that continue to shape what comes next. That’s why Thryv Therapeutics is launching myQTWave—a non-interventional, observational study designed to better understand the lived experiences of people with Long QT Syndrome, particularly Types 2 and 3. The study will gather real-world insights from patients and families to inform future treatments and ensure that the patient voice stays at the heart of innovation. Participant recruitment is planned to begin in early Fall 2025. Visit www.myqtwave.com and follow @myqtwave on Instagram for more information.
To learn more about Long QT Syndrome, visit The SADS Foundation website at: www.sads.org.
Author: David Hutton.
