Sara Catena is one of the first on a database of cardiac-arrest victims. It’s hoped the registry will solve the mystery behind young people dying suddenly.
Scientists hope to solve the mystery behind sudden cardiac arrests in young people by establishing a genetic database of everyone under the age of 50 with rare heart conditions and their families.
Associate Professor Jodie Ingles, the cardiac genetic counsellor leading the study, said the registry will help provide support and information to survivors and families who have lost loved ones to sudden cardiac arrest, while identifying underlying genetic causes that may lead to new treatments. She was initially diagnosed with long QT syndrome, a disorder of the electrical system that controls the heartbeat, and had a small defibrillator implanted in her chest.Later genetic testing revealed she actually had arrhythmogenic right ventricular cardiomyopathy, a rare and inherited disorder that replaces normal heart muscle with fatty, fibrous tissue that interrupts normal electrical signals in the heart.
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