The SADS Foundation is dedicated to providing information, assistance & hope.

Facts about these genetic conditions

• Each year in the United States, hundreds of young people die suddenly and unexpectedly due to cardiac arrhythmias.
• These conditions include Long QT Syndrome (LQTS), Hypertrophic Cardiomyopathy (HCM), Brugada Syndrome, etc.
• LQTS is now known to be 3 times more common in the US than childhood leukemia.
• HCM is the most common cause of sudden cardiac death in people under 35.
• Most cardiac problems that may cause sudden death in the young can be diagnosed and treated.
• With treatment, people with these conditions can have normal, productive lives.
• Most sudden cardiac deaths in children are due to hereditary conditions—so every family member should be tested.

What you can do

All children should have the  Risk Assessment Form completed—and be checked by a doctor if they answer “yes” to any question.

• You or your child’s doctor should fill out the  Risk Assessment Form. If you answer yes to any of the questions, your doctor should check your child’s heart.
• If your child has any of the following signs see your doctor.

Warning Signs:

• Family history of unexpected, unexplained sudden death in a young person (under 40), including sudden drowning and single car accidents
• Fainting (syncope) or seizures during exercise (or right after exercise), excitement or being startled
• Consistent or unusual chest pain and/or shortness of breath during exercise
• Ask your school or child’s sports association to make this questionnaire a mandatory for all kids before they participate in any active sport.

For more information:

LQTS Fact Sheet: simple explanation of LQTS, including the diagnosis of LQTS

LQTS Brochure: a pdf document with detailed explanation of LQTS

Mayo Clinic LQTS information

Information about other SADS conditions

Physician Referrals
These professional groups have information about physician specialists around the country:

Pediatric Electrophysiology Society: www.pediatricepsociety.org
Heart Rhythm Society: http://www.hrsonline.org/PatientInfo/specialist_locator.cfm

SADS has a list of physicians that specialize in the electrical part of the heart and have experience with Long QT Syndrome. These are mostly pediatric electrophysiologists. We don't have physicians from all parts of the country on our list.