Contact: Wendy Hirschhorn                              Contact: Lisa Salberg

E:  wendy@4hcm.org                                        E: lisa@4hcm.org

T: 212-826-8790                                             T: 973-983-7429

The Great Masquerader

Hypertrophic Cardiomyopathy -- HCM

      Hibernia, NJ (April 24, 2009) — Do you experience symptoms of asthma, or athletically induced asthma? Have you ever felt a panic attack coming on?  Are you suffering from what you think is depression? Has your doctor detected an innocent murmur? Those symptoms could be masking the "Great Masquerader" Hypertrophic Cardiomyopathy (HCM) -- a genetic disease which results in a thickening of the heart muscle – and is the leading cause of sudden death in children and young adults. 

One in five hundred north Americans have HCM and it can be detected and treated allowing patients to live long lives.  HCM is a not an uncommon heart disease. HCM is nearly seven times more common than Cystic Fibrosis. Each year, over 1600 Americans will die from HCM. Over fifty percent will be under the age of fifty four.

       “Between one in five hundred and one in one thousand births could be affected by HCM. Based on the data, we may estimate that as many as 600,000 people may have HCM in the US alone,” according to leading HCM cardiac specialist, Dr. Barry J. Maron of the Minneapolis Heart Institute.

Symptoms

There is no particular symptom or complaint which is unique to HCM and symptoms may occur at any stage in a person's life, even though the condition may have been present for some time. The reason for the onset of symptoms is often not clear. However, they include shortness of breath, chest pain, palpitations, light-headedness and blackouts. The most commonly seen misdiagnosis is asthma, specifically “athletically induced asthma” as a first sign or symptom. This is likely due to transient shortness of breath often seen in HCM. Unfortunately, in some instances, the first symptom may be sudden cardiac arrest. HCM accounts for 40 percent of all deaths on athletic playing fields across the country.

HCMA is a not for 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. Lead Medical Advisor is Dr. Barry J. Maron of the Minneapolis Heart Institute Foundation.

Lisa Salberg, CEO and Founder of the HCMA and co-author of HCM: For Patients, Their Families, and Interested Physicians is also a patient. She has been able to trace the disease in her family for at least four generations -- including her grandfather, her uncle, an aunt, her father and her sister – and has been an advocate for early detection, raising awareness about HCM while working toward improving and saving the lives of those with HCM since 1996.  For more information about The Hypertrophic Cardiomyopathy Association log on to  www.4HCM.org. To schedule an interview with Lisa Salberg, please call Lisa La Valle-Finan at 973-337-6895, or via email at LLFinan@4HCM.org  

Possible Media Questions

Ø  What is Hypertrophic Cardiomyopathy (HCM)?  How common is HCM?

Ø  How can we tell if HCM caused Tyler’s death?

Ø  Why do kids, young adults and athletes die suddenly from HCM?

Ø  What are the warning signs parents should learn?

Ø  What is the difference between “athlete’s heart” and HCM?

Ø  How do you know if you have HCM?

Ø   What are the symptoms?

Ø   What testing should be done to determine if you have HCM?

Ø  If HCM is not treated, will the heart get bigger?

Ø  Can you develop other heart-related conditions?

o   If you have HCM should you exercise, play sports, or be on a special diet?

o   If an immediate family member is diagnosed with HCM, should all family members be tested?

o   Is it expensive? 

o   Is it covered by insurance?

Ø  Are there occupations people with HCM should avoid?

Ø  Is there a cure for HCM?  Is there one in the pipeline?

Ø  How is HCM treated medically? Lifestyle changes?

Ø  Where can I find out more information about HCM