Standing Tall for SADS Foundation through Alex's Journey- February is American Heart Month!

When Alexis started having unexplained seizures, a heart condition was almost the last thing anybody expected.

Long QT Syndrome (LQTS) is a condition where a problem within the heart's electrical system occurs and leads to fainting, seizures, life threatening arrhythmias and cardiac arrest. It belongs to a group of diseases called Sudden Death Arrhythmia Syndromes (SADS). Unfortunately, more often than not, these syndromes go undetected and untreated. Many times, the first symptom that anything is wrong doesn't come until a fatal sudden cardiac arrest occurs.

Alexis was diagnosed with LQTS in June of 2013. A diagnosis means treatment and treatment means avoiding the life threatening effects of her condition. Her treatments include an Implanted Cardioverter-Defibrillator (ICD), medication, and lifestyle changes including knowing which medications prolong QT waves further in order to avoid them.

While grateful to have an answer, Alexis lives with consequences resulting from a late diagnosis every day. Living with undiagnosed LQTS for many years has overworked her heart and caused irreparable damage that has lead to heart failure.

Sudden cardiac arrest and the resulting tragic deaths are preventable! SADS conditions are treatable, but people must understand their risk factors and be aware that there may be a problem in order to receive proper diagnosis and treatment before it is too late. Early diagnosis is essential and awareness saves lives.

Facts about SADS Conditions:

Each year in the United States, 350,000 Americans die suddenly and unexpectedly due to cardiac arrhythmias. Almost 4,000 of them are young people under age 35. (CDC 2002) 10-12% of Sudden Infant Death Syndrome (SIDS) cases are due to Long QT Syndrome. LQTS is now known to be 3 times more common in the US than childhood leukemia. 1 in 200,000 high school athletes in the US will die suddenly, most without any prior symptoms—JAMA 1996; 276

SADS conditions are not the only heart diseases that are preventable. 1 in 4 people will die from heart disease in the US each year. If not you, who? Educate yourself on heart health. Know your risk factors and be proactive, because your heart matters.