February 28, 2023
Physicians and staff at the South Health Campus' Hypertrophic Cardiomyopathy Clinic offer patients a wide spectrum of care from genetic screening to surgery and research. Photo supplied.
It was through a farm accident that Julia Genaille discovered she had obstructive hypertrophic cardiomyopathy, a potentially fatal heart condition. She received comprehensive care at the South Health Campus' Hypertrophic Cardiomyopathy Clinic and says she’s grateful for the team's remarkable support. Photo supplied.
Story by Dawn Smith and Blain Fairbairn
CALGARY — A childhood accident involving an all-terrain vehicle turned out to be a blessing in disguise for Julia Genaille.
When she was just 12, Genaille experienced a farm accident near Regina and was taken to hospital as a precaution. At the time, healthcare providers didn’t find any injuries caused by the mishap, but they did notice a shadow around her heart.
“They did an X-ray and said, ‘I don’t see anything wrong with your ribs and your neck is fine,’” says Genaille, now 20. “But the shadow, along with the fact that I was born with a heart murmur, caused some concern.”
A few weeks later, Genaille visited a pediatric cardiologist for a follow-up appointment. That’s when her family received life-changing news.
“I was diagnosed with obstructive hypertrophic cardiomyopathy, and was told I would eventually need surgery, medication and a heart transplant,” says Genaille. “It was quite shocking.”
Hypertrophic cardiomyopathy is a term that describes a group of genetic disorders that results in the thickening of the heart muscle. The condition is relatively common, impacting one in 500 to 1,000 people in Canada, often occurring in family groups.
Patients with the condition can be affected in various ways: from being symptomless to developing an irregular heartbeat or arrythmias, to heart failure and even sudden cardiac death. The condition is the most common cause of sudden death in young athletes.
Since her diagnosis, Genaille's care has been extensive: she has an implantable cardioverter defibrillator that can deliver shocks for dangerous arrhythmias; she takes numerous medications; and she was one of the youngest patients ever to undergo a complex open-heart surgery that involved cutting away some of her excess heart muscle.
Still, Genaille is grateful her condition was discovered when it was. As a very active individual with very few symptoms, she wasn’t aware of her risk of sudden death.
She’s also incredibly thankful for the care she has received at the Hypertrophic Cardiomyopathy Clinic (HCM), at South Health Campus. “It has been fantastic,” she says. “They go above and beyond patient care to really knowing me as a person and support me.”
A joint AHS/University of Calgary initiative through the Libin Cardiac Institute, the HCM takes a family-centric approach in serving its growing number of active patients, making it one of the largest clinics of its kind in the country.
“We have a grand vision for the clinic,” says Dr. Grant Peters, clinical director of the HCM. “We have a multidisciplinary team that meets often and looks collaboratively at how to optimize outcomes for each patient.”
That team includes electrophysiologists specializing in arrythmia and sudden-death prevention. There’s also access to a genetics clinic that conducts comprehensive screening for known genetic variants of HCM and a cardiac surgeon who specializes in myectomy surgery to remove excess portions of the heart and relieve obstructions.
In addition to the clinical excellence, the HCM has a large research component, headed by Dr. Bobby Heydari, a clinical associate professor in the Department of Cardiac Sciences who specializes in cardiac MRI.
Research ranges from involvement in clinical trials to determine the efficacy of new pharmaceutical treatments, to investigating potential markers for those at higher risk of sudden cardiac death. The clinic is also involved in national and international registries collecting data on hypertrophic cardiomyopathy patients to study numerous aspects of the disease, such as fibrosis and genetic characteristics.
“We are quite proud of the clinic, there is so much going on,” says Heydari. “It’s an exciting time to specialize in hypertrophic cardiomyopathy.”
