Jenylyn’s Story of Survival and Advocacy

On July 10, 2005, Jenylyn experienced a life-changing moment. While in the bathroom, she collapsed unexpectedly.

As a new mom, she dismissed the incident as exhaustion from adjusting to life with a newborn. Determined to rest, she spent the night at her mother’s house, hoping to recuperate and give her baby some bonding time with Grandma.

The next day, Jenylyn suffered a sudden cardiac arrest. Her mother, quick to react, performed CPR and saved her life. 

In the hospital, doctors conducted a series of tests. Neurological examinations and cardiology evaluations revealed a history of Long QT Syndrome (LQTS), heart block, and fainting episodes from her past. A review of her childhood EKG records, combined with an investigation into her family’s cardiac history, confirmed the diagnosis. 

Upon learning about her condition, Jenylyn’s first thought was of her baby. Could her daughter inherit LQTS? This fear, coupled with the trauma of her cardiac arrest, left her grappling with anxiety and post-traumatic stress. To safeguard her heart, doctors recommended that she be fitted with an Implantable Cardioverter Defibrillator (ICD). 

Today, her daughter is 19 years old and faces her own challenges with borderline LQTS results. “She’s afraid she might need an ICD one day,” Jenylyn shares, reflecting on how LQTS impacts not just her but her entire family.

Her parents constantly worry she might overexert herself. Her husband remains emotionally strong, but the financial burden of medical care and maintaining an emergency fund weighs heavily on him.

Through it all, Jenylyn’s resilience shines. “I’d tell recently diagnosed people with LQTS to write down all your questions and not be afraid to ask your doctor,” she advises. “Advocate for yourself and for the hearts of the ones you love.”

She also champions genetic testing and encourages others to stay proactive about their health. “If your results show a Variant of Unknown Significance like mine, keep up with routine visits and always address your symptoms or concerns.”

Jenylyn’s journey with LQTS is a testament to strength, hope, and patient advocacy. By sharing her story, she aims to inspire others to face the challenges of LQTS with courage while prioritizing their health and loved ones.

To learn more about Long QT Syndrome, visit The SADS Foundation website at: www.sads.org. 

Author: David Hutton.