Fifteen Years After ARVD Changed My Life

A near-fatal ventricular arrhythmia ended my soccer career in 2011 and shaped the athletic trainer I became

By Shelby C. Daly, DAT, ATC, CSCS

Fifteen years ago, I was a 19-year-old collegiate soccer player training alone when my vision began to disappear. I felt lightheaded and weak. Breathing became difficult. I called my parents because I knew something was wrong, but I did not understand how little time I had.

By the time they reached me about five minutes later, I was unconscious, unresponsive and breathing with difficulty. In the ambulance, my heart rate was approximately 240 to 250 beats per minute and my blood pressure was 71/35. The rhythm was consistent with ventricular tachycardia, a life-threatening arrhythmia that can deteriorate into cardiac arrest and sudden cardiac death.

My heart converted to a sinus rhythm during transport. I regained consciousness. I survived an event that easily could have ended differently.

August 2026 marks 15 years since I was diagnosed with arrhythmogenic right ventricular dysplasia, now more commonly called arrhythmogenic right ventricular cardiomyopathy, or ARVC. An anniversary like this is difficult to name. It is not a celebration of the day my life split into before and after. It is a recognition that I am still here, still learning how the diagnosis changed me and still carrying its lessons into athletic training.

The warning signs were there

Eight months before my collapse, I had experienced a syncopal episode. I also had a maternal family history of arrhythmia and ARVD/C. My maternal uncle developed symptoms while young and died at age 27 after going for a jog.

I had completed nine preparticipation examinations from middle school through college without receiving a cardiac diagnosis. I looked like a healthy athlete. I trained, competed and planned to return to Pacific Lutheran University for another soccer season.

My experience does not mean every preparticipation examination should detect every inherited cardiac condition. Some diseases develop over time. Symptoms can be intermittent, and a person may not know which family details matter. It does mean that a prior clearance cannot cancel a new red flag. Exertional syncope, near-syncope, palpitations, unusual shortness of breath or an unexplained decline in exercise tolerance deserve careful follow-up.

Family-history questions also need to be specific. Asking only whether heart disease runs in the family may not uncover the information a clinician needs. Ask about unexplained sudden death, relatives who died during exercise, early cardiac death, cardiomyopathy, arrhythmias, pacemakers and implanted defibrillators.

Understanding ARVC

ARVC is a rare, often inherited cardiomyopathy that affects the heart muscle and its electrical system. In the classic right-dominant form, diseased heart muscle is progressively replaced by fibrous and fatty tissue. These changes can create an unstable electrical pathway, weaken cardiac function and trigger ventricular arrhythmias. Current literature commonly estimates that ARVC affects about 1 in 2,000 to 1 in 5,000 people, although the true prevalence is uncertain because the condition can be difficult to recognize and varies widely even within the same family.

There is no single test that identifies every case. Diagnosis may combine symptoms, family history, electrocardiography, ambulatory rhythm monitoring, echocardiography, cardiac MRI, documented arrhythmias and genetic testing. After my collapse, an electrocardiogram documented ventricular arrhythmia and an echocardiogram showed right ventricular enlargement. Those findings, combined with my family history, led to my diagnosis.

Genetic testing later confirmed that I carry a pathogenic variant in PKP2, a gene associated with proteins that help cardiac cells maintain structural connections. That result helped explain my disease and allowed relatives to pursue cascade testing. Several learned they carried the same variant. A genetic result does not predict an identical course for every family member, but it can identify who may benefit from specialized evaluation and ongoing surveillance.

When cardiac emergencies reach the national stage

In the 15 years since my diagnosis, several nationally and internationally known athletes have experienced cardiac emergencies in public view. Millions watched Buffalo Bills safety Damar Hamlin receive CPR and defibrillation after collapsing during a 2023 NFL game. His cardiac arrest was attributed to commotio cordis, an electrical disturbance caused by a precisely timed blow to the chest. In the NWSL, Angel City FC defender Savy King received CPR after collapsing during a May 2025 match. Doctors later identified an anomalous left coronary artery, a congenital heart abnormality that had caused a heart attack, and King underwent open-heart surgery. Four months later, Racing Louisville FC midfielder Savannah DeMelo suffered cardiac arrest during a match because of an undiagnosed cardiac arrhythmia. Soccer player Christian Eriksen survived a cardiac arrest during the 2021 European Championship. In 2026, retired world champion runner and Olympic medalist Jenny Simpson survived a sudden cardiac arrest at a community track event after receiving immediate CPR and AED treatment. Although these athletes experienced different underlying conditions, their stories brought cardiac emergencies into public view and demonstrated the importance of immediate recognition, trained medical responders and access to lifesaving care.

These events have made sudden cardiac arrest more visible, but visibility should not be confused with a single diagnosis or a sudden epidemic among athletes. Cardiac arrest is the outcome. The cause may be an inherited cardiomyopathy, a congenital structural abnormality, coronary disease, myocarditis, an electrical disorder or commotio cordis. My ventricular arrhythmia arose in the setting of ARVC. Hamlin's event had a different mechanism. The emergency response, however, depended on the same essentials: rapid recognition, immediate CPR, prompt defibrillation and coordinated advanced care.

Sudden cardiac arrest remains rare for any individual athlete, and published incidence estimates vary because studies use different age groups, sports, case definitions and surveillance methods. Risk is also not distributed evenly across athlete populations. The recurring cases seen across professional, collegiate, scholastic and recreational sports show why rarity cannot become an excuse for poor preparation. Athletic trainers plan for catastrophic events because the consequence is severe and the time to act is measured in seconds.

The end of one athletic identity

My immediate treatment included an implantable cardioverter-defibrillator, or ICD, to monitor my rhythm and deliver therapy if a dangerous arrhythmia occurred. I was also told that I could no longer participate in competitive soccer or strenuous athletics.

The recommendation protected my health. It also required me to grieve the person I expected to be. Sport had shaped my daily life, my friendships, my education and my plans for the future. The diagnosis did not take away only a season. It took away the version of adulthood I had been building toward.

I stayed connected to my university soccer program as a team manager and athletics photographer. I completed my undergraduate degree, then entered the Master of Science in Athletic Training program at California Baptist University. As a graduate student, I converted my medical history into an ARVD/C case study and presented it in 2014. Writing about myself in the third person gave me clinical distance. I became "the patient," a 19-year-old soccer player with an unusual presentation.

That approach helped me understand the disease. It did not explain what it felt like to live inside the case.

Survival continued after the hospital

A written case can appear orderly: presentation, diagnosis, treatment and outcome. Life with ARVC has not followed a straight line.

I experienced recurrent ventricular arrhythmias, antitachycardia pacing and multiple ICD shocks. My physicians adjusted medications as they worked to reduce the arrhythmia burden and manage side effects. Dehydration, illness, disrupted sleep, physical exertion and stress became more than routine concerns because each could affect my cardiac stability.

In 2017, after worsening ventricular tachycardia and repeated device therapies, I underwent endocardial and epicardial catheter ablation. My ICD generator was replaced. In 2021, an ICD lead fractured, requiring an external wearable defibrillator while I waited for a procedure and a new lead.

The ICD has protected me, but receiving a shock while conscious is traumatic, especially an episode that needs multiple shocks. The possibility of another shock can affect sleep, exercise, travel, work and the willingness to be alone. Survival is measured in more than a pulse. A patient may leave the hospital carrying fear, grief, device anxiety and questions about who they are allowed to become.

How the diagnosis shaped my practice

I did not know in 2011 that the loss of my soccer career would shape the way I care for athletes. Fifteen years later, the connection is clear.

I have worked in professional soccer, collegiate athletics, orthopedic medicine and event coverage. My implanted device and surgical scars have accompanied me into every setting. They remind me that an apparently healthy athlete may be carrying a condition no one can see. They also remind me how frightening it is to report a symptom when an athlete believes that honesty could cost a roster spot, a scholarship or the identity they have spent years building.

Athletic trainers cannot diagnose every hidden cardiac condition from the sideline. We can notice when a story does not fit a harmless explanation. We can ask what happened immediately before the symptoms, whether they occurred with exertion and whether there have been previous episodes. We can revisit family history instead of assuming it was adequately addressed years earlier. We can document what we hear and refer when red flags are present.

We can also prepare for the emergency we hope never occurs. A rehearsed emergency action plan, immediate access to a working AED, responders who know their roles and a clear process for activating EMS cannot depend on luck. I survived because I was able to call for help, my parents reached me, EMS responded, my rhythm converted and specialists recognized the pattern. A different sequence could have placed my name among sudden cardiac death statistics.

What I want athletic trainers to remember

My anniversary is personal, but the lessons belong at the center of athletic training practice.

Take exertional collapse seriously. Ask precise family-history questions. Do not let a previous clearance outweigh a new symptom. Keep emergency plans current and make sure the AED is accessible. After the acute event, continue caring for the person whose sport, independence and sense of safety may have changed overnight.

Listening may be the most important first step. Athletes are taught to tolerate discomfort and may minimize symptoms to protect playing time or avoid disappointing others. An athletic trainer often has the access and trust to recognize when the athlete's words, timing and history do not add up. Curiosity in that moment can change the course of a life.

I still miss soccer. I still live with a disease that can interrupt ordinary plans without warning. The 15 years since my diagnosis have included procedures, device therapies, difficult adjustments and opportunities I never expected.

My competitive career ended on a field in 2011, but my connection to athletes did not. I became an athletic trainer who understands, both clinically and personally, that the emergency is only the beginning of the patient's story. Fifteen years later, I am grateful to be here to tell mine.

Sources

Daly SC, Baker JE, Warren L, MacDonald NJ. Arrhythmogenic Right Ventricular Cardiomyopathy Dysplasia Treatment and Management A Case Report. Unpublished case materials and medical chronology.

Towbin JA, McKenna WJ, Abrams DJ, et al. 2019 HRS expert consensus statement on evaluation, risk stratification, and management of arrhythmogenic cardiomyopathy. Heart Rhythm. 2019;16(11):e301-e372.

Corrado D, van Tintelen PJ, McKenna WJ, et al. Arrhythmogenic right ventricular cardiomyopathy evaluation of the current diagnostic criteria and differential diagnosis. European Heart Journal. 2020;41(14):1414-1429.

Iezzi L, et al. Arrhythmogenic cardiomyopathy diagnosis and management. Systematic review of clinical practice guidelines and recommendations. 2025.

Corrado D. Declining risk of sudden cardiac death in young athletes. Circulation. 2024.

National Football League. Bills safety Damar Hamlin makes remarkable return to game action. 2023. Event described as commotio cordis.

Kim JH, et al. Race Associated Cardiac Event Registry analysis of cardiac arrest in United States marathons and half-marathons, 2010 to 2023. JAMA. 2025.

Reuters. Angel City’s Savy King opens up about on-field collapse. Published July 16, 2025. Accessed September 20, 2026. https://www.reuters.com/sports/soccer/angel-citys-savy-king-opens-up-about-on-field-collapse-2025-07-16/

Reuters. Louisville’s Savannah DeMelo sues doctors, alleging missed diagnosis. Published September 16, 2026. Accessed September 20, 2026. https://www.reuters.com/sports/soccer/reports-louisvilles-savannah-demelo-sues-doctors-alleging-missed-diagnosis--flm-2026-09-16/