Finding Hope Through Awareness

As Christmas approaches, we naturally turn towards hope, towards light, connection, and care for one another. While this season is not an easy time to speak about loss, it is a meaningful time to reflect on learning, protection, and possibility.

In 2024, my daughter Poppy died from undiagnosed CPVT, an inherited cardiac ion channelopathy. Her death changed our family forever. But her life and what it continues to teach holds hope.

This reflection is shared not to alarm, but to gently widen understanding. Because when cardiac channelopathies are recognised, lives are saved.

What Are Cardiac Channelopathies?

Ion channelopathies are conditions caused by faults in the tiny channels that control electrical signals in our cells. In the heart, these signals regulate rhythm.

These conditions affect the electrical system of the heart, not its structure. The heart may look normal on scans, routine tests may be reassuring, and risk can remain hidden.

Conditions such as CPVT, Long QT syndrome, and Brugada syndrome often affect young, otherwise healthy people.

Symptoms of Cardiac Channelopathies

The absence of dramatic symptoms is not the same as the absence of risk.

Symptoms may include fainting or near-fainting during exercise, collapse during emotional stress, seizure-like episodes with normal neurological tests, sudden fatigue or reduced activity, or rapid recovery after unexplained events.

Individually, these signs can be difficult to explain. Seen together, they tell a story.

Context Is Key

A faint is not always “just a faint.”

In CPVT, dangerous heart rhythms are triggered by adrenaline,  excitement, stress, or physical exertion. When the trigger passes, the rhythm may settle, leaving no obvious trace.

This is why when symptoms occur can matter as much as what they look like.

Families, Schools, and Young People Play a Role

Young people often adapt quietly, reducing activity or avoiding exertion without understanding why.

Schools, colleges, and universities are frequently where patterns first become visible. Collapse during PE, unexplained seizures, or fatigue that does not fit the picture may all be early signs.

Awareness in these settings is not about fear, it is about protection.

Diagnosing Cardiac Channelopathies Brings Hope

Cardiac channelopathies are treatable. With recognition, individuals can be supported through medication, lifestyle adjustments, specialist follow-up, family screening, and in some cases, implantable devices.

Early diagnosis transforms outcomes, not only for individuals, but for entire families.

Why This Matters at Christmas

Christmas invites us to slow down, to listen, and to notice who might be struggling subtly.

Poppy’s symptoms were easy to overlook, but meaningful. By learning to recognise these signs, in clinics, classrooms, sports halls, and homes, we create safer futures.

That is her legacy. That is where the hope is.

With Thanks

Thank you to the clinicians, educators, researchers, and families who continue to learn, listen, and advocate.

Awareness is an act of kindness.

And kindness saves lives.

Top 5 Essential Reads on Cardiac Channelopathies and SADS

1. Priori SG et al. (2002). Clinical and molecular characterization of patients with catecholaminergic polymorphic ventricular tachycardia. Circulation, 106(1), 69–74.Foundational study on CPVT and its clinical features.

2. Tester DJ & Ackerman MJ (2014). Genetic testing for cardiac channelopathies. Heart Rhythm, 11(10), 1741–1749.Explains how genetics can identify at-risk individuals before tragedy strikes.

3. MacCormick JM et al. (2009). Misdiagnosis of long QT syndrome as epilepsy. Heart, 95(20), 1607–1612.Highlights how arrhythmias can mimic neurological conditions.

4. Bagnall RD et al. (2016). Sudden cardiac death in the young. New England Journal of Medicine, 374, 2441–2452.Comprehensive overview of sudden death in young people and risk factors.

5. Drezner JA et al. (2013). Cardiovascular care of athletes. Journal of the American College of Cardiology, 62(17), 1587–1601.Practical guidance on detection and prevention in school and sports settings.