The Arrhythmia Train is pulling out of the station. In my talk at Canadian Cardiovascular Congress (CCC) in Vancouver I spoke about the growing awareness of Inherited Heart Rhythm Disorders that I have been observing in many communities and organizations. My observation has been confirmed over the past few weeks as there has been a flood of arrhythmia news both in the mainstream media and in the places where only an arrhythmia geek like me would look.
The folks at CHEO (Children’s Hospital of Eastern Ontario, Ottawa) have put genetic heart rhythm disorders, especially Long QT Syndrome, front and centre. CHEO has launched a legal challenge to the concept of patenting a gene or gene sequence. A positive outcome to the case will benefit all Canadian families seeking diagnosis of a genetic disease.
In conjunction with the CHEO story CTV ran the story of the Dines Family from Ottawa. Their story is similar to many of the stories we hear from families affected by an arrhythmia gene. The elements of family history and misdiagnosis in the 20th century are common themes. The fact that a definitive diagnosis was made immediately based on a simple, inexpensive, non-invasive ECG is also noteworthy.
A colleague from Victoria BC sent me information about Sports Cardiology BC and the ECG screening clinics that they are hosting in that province. At the end of November they will be hosting a clinic in Victoria for competitive athletes between the ages of 12 and 35. To the best of my knowledge, please correct me if I’m wrong, this is the first and only group to hold ECG screening clinics for Canadian youth. While the merit of ECG screening is debated in the cardiology community PACED sees this as a very good thing.
In a related story Dr. Vicotria Vetter the highly respected paediatric cardiologist from Children’s Hospital of Philadelphia (CHOP) came out firmly in support of ECG screening for all youth.
More positive news (with a very sad and tragic etiology) out of BC is the $1.7 million out-of-court settlement paid by a Vancouver School Board to the family of child with Long QT. The board failed to prevent the cardiac arrest which left the Grade 5 girl with significant physical and neurological deficits. These preventable tragedies should not happen however lawsuits encourage the type of due diligence that can prevent future tragedies. Ontario law firm Miller Thomson picked up on the story and discusses the implications in their client newsletter. Our thoughts and prayers are with Bezawit and her family.
Perhaps the most exciting news to come out of CCC is that the BRIDGE project at Canadian Cardiovascular Society (CCS) has invited a SUDY (Sudden Unexpected Death in Youth) working group to join the project. This invitation from CCS represents invaluable recognition for Inherited Heart Rhythm Disorders, the Electrophysiologists that treat them and the families affected by them. To learn more about the BRIDGE project visit the website.
Closer to home PACED is very pleased to announce that a new and improved version of Bill 81, The Inherited Heart Rhythm Disorder Awareness Act, 2012 is in the works and may be receiving First Reading at Queen’s Park prior to the Christmas Break. Amongst other things bill require that 911 be called for all children that faint during physical activity at school or while participating in minor sport and that they be physician cleared for return to play. It will also require educators and coaches to receive regular training on recognizing and responding to the warning signs.
Here are seven links to recent news stories that are directly related to creating greater awareness and heightened sensitivity to the warning signs and prevention strategies for Inherited Heart Rhythm Disorders and sudden cardiac arrest in youth. The Arrhythmia train is picking up passengers and momentum.