Hope for families with heart rhythm disorders

Victor ThayIn early 2010, Victor Thay, a fun-loving friend, generous family member, and accomplished fund manager, passed away from sudden cardiac arrest. His friends, family, and even he himself did not know that he had been living with Long QT syndrome—an inherited condition that causes the heart to beat irregularly and puts individuals like Victor at risk of sudden death.

In BC alone, an estimated 7,000 people may be affected by dangerous and tragic inherited heart rhythm disorders (IHRD) like Long QT. Often, these conditions have few warning signs and go undetected for years before causing sudden, unexpected cardiac arrest.

Victor’s mother, Ms. Robin Thay, was deeply saddened by the passing of her son and became determined to fully understand the cause. She wanted to know more about IHRDs and wanted to help those with the condition live fuller, healthier lives. In her determination, Ms. Thay contacted every medical faculty of major universities in Canada, telling her story and asking for a solution.

She learned that recognizing IHRD in a family member is a strong sign that others in the family may be affected. And to prevent tragedies like Victor’s, a more accurate system of testing to detect and treat IHRDs is needed—especially for family members who have not experienced symptoms.

In response to Ms. Thay’s urgency and the dire need to better diagnose IHRDs, UBC’s Dean Gavin Stuart introduced Ms. Thay to the work of Dr. Andrew Krahn, Professor and Head of the UBC Division of Cardiology. Dr Krahn’s research focuses on preventing sudden cardiac arrest caused by irregular heartbeats. He is currently compiling invaluable patient data, creating a biobank of genetic and molecular information that will lead to important discoveries in IHRD. The full genetic profile of Long QT patients Dr. Krahn hopes to develop will eventually prevent countless cardiac arrests and create a brighter future for people and families with inherited heart conditions.

Dr. Krahn has also established the Canadian Genetic Heart Rhythm Network, a group of inherited heart rhythm experts across Canada who treat these diseases in specialized clinics and seek to better understand them. Using this network, Dr. Krahn seeks to build a National Long QT Research Registry to compile heart beat information of all known Long QT patients and their families. This information will help researchers identify how and when heart rhythm disorders are most often discovered during exercise, to improve diagnosis and awareness of Long QT in individuals across Canada.

This life-saving IHRD research prompted Ms. Thay to donate $50,000 in her son’s name to the UBC Faculty of Medicine. With this support, Dr. Krahn is continuing to build an innovative research program that integrates patient experiences, genetic analysis, and a comparison of international health care management options from a range of experts.

Together with dedicated researchers and clinicians at UBC, the Thay family is now helping to expand medical knowledge, create awareness, and prevent unexpected tragedies for families living with IHRD.