Vail Daily letter: Raising awareness
Each year in the United States 400,000 Americans die suddenly and unexpectedly due to heart rhythm problems. An estimated 4,000 of them are young people under age 35, according to CDC reports. Sudden cardiac death is one of the top five leading causes of death in young adults.
Young lives continue to be lost unnecessarily due to Long QT Syndrome and other genetic heart rhythm conditions called Sudden Arrhythmia Death Syndromes, which can cause sudden death in young, apparently healthy, people.
Sudden Arrhythmia Death Syndrome is the suspected cause of Liza’s collapse, leading to her death, with an otherwise normal autopsy and toxicology. She did have a previous episode of a sudden collapse 8 years ago. At that time this condition was being researched but not a lot was known about prolonged QT.
From the SADS brochure, http://www.SADS.org: “In 1991, a group of scientists headed by Drs. Michael Vincent and Mark Keating at the University of Utah isolated the chromosomal location for the first gene known to cause Long QT Syndrome. This was a landmark discovery in the study of unexplained sudden death in the young, and confirmed suspicions that LQTS was more common than once believed. As doctors learned more about prolonged QT intervals, it became clear the syndrome was widely misunderstood and often misdiagnosed. The SADS Foundation was organized to implement widespread educational programs to make people aware of these conditions that can cause sudden death in the young and to provide support to people and families living with this.”
Genetic testing for LQTS is now the “standard of care.” We are asking to get Liza’s genetic testing done as recommended by the SADS Foundation. We have been advised to get other family members, especially Liza’s two sons, evaluated to determine their risk and need for intervention, and hopefully prevent this tragedy from striking our family again. These test results alert physicians and patients to avoid certain medications which have been shown to cause QT prolongation and increased risk of fatal arrhythmias such as Torsades de Pointes.
Because SADS conditions are passed down from parent to child, each child of an affected parent has a 50 percent chance of inheriting the condition. It is estimated that over half of the 4,000 SADS deaths each year of children, teens or young adults have one of the top two warning signs: One, family history of a SADS diagnosis or sudden unexplained death (usually undiagnosed and untreated) of a family member, or, two, fainting.
Volunteers across the country are participating in SADS Awareness Month in October to raise awareness and educate the public and medical professionals about the symptoms and warning signs of undetected conditions that cause SCA and to prevent the senseless deaths of more young people.
Thank you to Dr. Robert Kurtzman and Ben Linscott for your compassion and resources. You both are very helpful and kind.
Mother of Liza Repasky Lowe
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