Zachary Herold Ended His Soccer Career at Age 17 Because of a Heart Condition

The Hypertrophic Cardiomyopathy Association Says Zachary Was Lucky; Without Diagnosis, it Could Have Ended His Life

Zachary Herold Ended His Soccer Career at Age 17 Because of a Heart Condition

The Hypertrophic Cardiomyopathy Association Says Zachary Was Lucky; Without Diagnosis, it Could Have Ended His Life

HIBERNIA, N.J., (May 18, 2010) – Zachary Herold, 17, an American soccer player who played defense for Toronto FC, was diagnosed with Hypertrophic Cardiomyopathy (HCM), a genetic disease which results in a thickening of the heart muscle. HCM is the leading cause of sudden death in children and young adults. It accounts for 40 percent of all deaths on athletic playing fields across the country.

Zachary’s heart defect was diagnosed in a preseason medical exam. 

“Prior to his diagnosis, it is likely that Zachary had never heard of HCM,” said Lisa Salberg, founder and CEO of the Hypertrophic Cardiomyopathy Association (HCMA) (www.4hcm.org), the non-profit resource for HCM patients, their families and physicians.

“The awareness of the disease is still not out there and his first symptom could have been deadly, Salberg said. “The HCMA is pleased he has been diagnosed and can benefit from treatment.”

Estimated to affect one in 500 people in North America, HCM, a genetic cardiac condition, can be detected and treated allowing patients to live long lives. Salberg says that simply improving pre-participation screening forms and conducting ECGs on properly selected children and athletes will reduce sudden cardiac death. 

In addition, genetic testing can now be used to ensure a proper diagnosis. The results could help to uncover other family members that may also be affected by the genetic mutation that causes HCM.

“Since HCM can be silent – as it was in Zachary’s case until identified during his pre-season exam – it is possible that other members of his family are at risk and do not know it,” said Dr. Sherri Bale, clinical director of Gaithersburg, Md.-based GeneDx (www.genedx.com/Cardiology), which provides genetic testing for HCM and other rare disorders.

“Genetic testing to identify the underlying mutation in Zachary will provide the information his family needs so they can undergo a very simple and inexpensive genetic assessment of their own risk, even though they may have completely normal cardiac exams at this time,” Dr. Bale said.

“Early screening and appropriate genetic testing are especially important in children since the first HCM event could be sudden cardiac death on the playground or the playing field,” said Salberg. “Since athletes can naturally have larger hearts, genetic testing can play an important role in distinguishing HCM heart from normal athlete’s heart.”

Getting The Right Answers About HCM

The Hypertrophic Cardiomyopathy Association was founded in 1996 by Lisa Salberg, an HCM patient who has been able to trace the disease in her family for four generations. She and Dr. Barry Maron, world-renown director of the HCM Center at the Minneapolis Heart Institute Foundation, are co-authors of HCM: For Patients, Their Families, and Interested Physicians.

The HCMA website – www.4hcm.org – offers tips, exercise guidelines, resources and recommended procedures and has the answers to these commonly asked questions:

• What is Hypertrophic Cardiomyopathy (HCM)?  How common is HCM?
• Why do kids, young adults and athletes die suddenly from HCM? Are there warning signs parents should know about?
• What is the difference between “athlete’s heart” and HCM?
• How do you know if you have HCM - what are the symptoms and what testing should be done to determine if you have HCM?
• If HCM is not treated, will the heart get bigger?  Can you develop other heart-related conditions?
• If you have HCM should you: exercise, play sports, be on a special diet?
• If an immediate family member is diagnosed with HCM, should all family members be genetically tested?  Is it expensive?  Is it covered by insurance?
• Are there occupations people with HCM should avoid?
• Is there a cure for HCM?  Is there one in the pipeline?
• How is HCM treated medically and through lifestyle changes?

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About the Hypertrophic Cardiomyopathy Association

The HCMA is a non-profit 501(c)(3) organization formed in 1996 to provide information, support and advocacy to patients, their families and medical providers. The HCMA is structured with medical advisors governing all of the medical content provided by the HCMA and a Board of Director governing the day-to-day operations and growth. The HCMA is supported by grants and donations.For more information visit www.4hcm.org.

About GeneDx

GeneDx is a highly respected company in genetic testing for rare inherited disorders. Two scientists (Drs. Sherri Bale and John Compton) from the National Institutes of Health (NIH) founded the company in 2000 to address the needs of patients and clinicians concerned with rare inherited disorders. Currently, GeneDx offers testing for over 300 rare Mendelian disorders using DNA sequencing and deletion/duplication analysis of the associated gene(s). GeneDx also offers oligonucleotide microarray-based testing for detecting chromosomal abnormalities, testing for autism spectrum disorders, and testing for various forms of inherited cardiac disorders (www.genedx.com/Cardiology). At GeneDx, technical services are matched by expertise and customer support. The growing staff includes more than 15 experts in molecular and clinical genetics and 9 genetic counselors, who are just a phone call or email away.