A Guide to Hypertrophic Cardiomyopathy: For Patients, Their Families, and Interested Physicians

Hypertrophic cardiomyopathy (HCM) is the most common genetic heart disease, but has been under–recognized and often misrepresented. However, more recently, the understanding of HCM has evolved and options for diagnosis and treatment have advanced considerably. HCM can now be regarded as a contemporary and treatable disease, compatible with normal or extended longevity. This book was written by Dr. Barry J. Maron , an authority on HCM, and Ms. Lisa Salberg , Founder of the Hypertrophic Cardiomyopathy Association (HCMA), and herself an HCM patient. This new 3rd edition provides an important update on advances in diagnosis, emerging treatment options, and advice for patients. It is a unique resource and cornerstone of current educational efforts making practical information about HCM accessible to a wide range of patients and physicians.

Acknowledgments and Dedications vii Foreword viii Introduction: Tips for using this book x What is hypertrophic cardiomyopathy (HCM) 1 Historical perspective and names 3 How common is HCM? 5 What is the cause of HCM? 8 Structure of the heart 14 Heart function in HCM 21 Left ventricular outflow obstruction 22 When does HCM develop? 25 Gender and race 27 What are the symptoms of HCM? 28 How is HCM diagnosed and what tests are used? 31  Other tests that may be useful in assessing HCM in selected patients 38 Inaccurate diagnosis 40 General outlook for patients with HCM 40 Complications of HCM 43 Special considerations: athletes and sports activities 53 Treatments for HCM 55 Special considerations for implantable defibrillators 65 Obstructive sleep apnea and HCM 78 Gene therapy and stem cells 78 Automated external defibrillators (AEDs) 79 HCM as a chronic disease: Is a cure available? 80 Are you newly diagnosed? 82 Adapting psychologically to HCM 84 Family screening 87 What about having children? pregnancy and delivery 89 Routine medical care 91 Community screening for HCM 96 Community outreach 97 Driving 98 Traveling 99 Military service 100 Social security benefits 101 Family and Medical Leave Act 103 Health insurance 103 Life insurance 105 Students 105 HCM centers 106 Support and advocacy groups (HCMA) 107 What research is being conducted? 110 The 36 most frequently asked questions about HCM that are addressed to the HCMA by patients, caregivers, and family members 112 Glossary 123 Further reading 130 HCMA membership application 135 Index 137

Barry J. Maron, MD , Minneapolis Heart Institute Foundation, Minneapolis, MN, USA; and Adjunct Professor of Medicine, Tufts University School of Medicine, Boston, MA, USA; and Adjunct Professor of Medicine, Mayo Medical School, Rochester, MN, USA Lisa Salberg , Founder and CEO, Hypertrophic Cardiomyopathy Association (HCMA), Hibernia, NJ, USA