Meet Dr. Ian Paterson, Director of the CCRCC
at the University of Ottawa Heart Institute
The Canadian Centre for Rare Cardiac Conditions (CCRCC) at the University of Ottawa Heart Institute (UOHI) is an international centre of excellence specializing in team-based care for patients living with rare cardiac conditions and their families.
My colleague, Dr. David Birnie, and I recently grew concerned about the state of care for our patients with rare cardiac conditions.
A rare disease is defined as a condition found in less than five out of 10,000 people and to date, over 7,000 have been identified. Because there are so many rare diseases, it has been estimated that 1 in 12 people are affected; so, they are actually not uncommon in our community.
A rare cardiac condition may limit a person’s quality of life and is often life-threatening. While cardiologists are well-trained, the complexity of rare cardiac conditions often requires more specific knowledge to identify, diagnose, and treat them correctly.
Our new Centre at the Heart Institute plays a crucial role in addressing this knowledge gap. It serves as an important hub for individuals with rare cardiac conditions by connecting them to the Institute’s specialized clinics for a comprehensive evaluation of their diagnosis, treatment, and rehabilitation.
There’s also reason for hope.
I am happy to share that several advancements have been made over the last ten years to improve patient care for rare conditions. These include improvements in testing such as advanced imaging and effective treatments. Several recent initiatives by our program include training cardiologists to specialize in rare cardiac conditions, conducting new research studies and creating innovative diagnostic tools. More studies are still needed to better understand the factors influencing the health and recovery of patients with rare conditions.
Young people diagnosed with rare conditions today are living decades longer than previous generations, with very full lives thanks to advancements in science and care. However, research is still just catching up on how to best treat these conditions when they are older.
It’s important to recognize that conditions like these often persist and can change over a lifespan.
Looking ahead, I am most excited about our capacity to explore beyond heart-related issues and to develop new science and tools to treat the “whole” person.
In the next 10 to 20 years, we will be able to zero in on an individual’s health in a highly customizable and targeted way rather than just focusing on a single organ. A recent example of work like this is a project called the Brain-Heart Interconnectome, a ground-breaking interdisciplinary research program on the connections between brain-heart disorders.
Although the Centre is relatively new, I have seen how it has positively impacted patients and their families. The team is committed to fostering collaboration among all the Institute’s departments and specialists and our national and international partners. We are all working to accelerate significant discoveries and treatments in the coming years.
Together, we can make a profound difference in the quality of life for people living with rare cardiac conditions. I am genuinely excited about the potential of our collective efforts.
A former physician’s journey with a rare
cardiac disease: Dr. Guy d’Anjou
Perhaps you were one of the over 9,000 Ottawa-area babies that Guy
d’Anjou helped bring into the world over the span of his 40-year career as an obstetrician.
Dr. d’Anjou worked at the The Ottawa Hospital / General Campus and Montfort, and trained countless new doctors.
After a rewarding career caring for families over many generations, Guy, now happily retired, settled
with his wife into their new lives in Victoria, B.C.
While enjoying the milder winters, the former physician’s health started to decline. He struggled to find a family doctor and ultimately decided
to move back to Ottawa for better access to care, a journey that was not without its challenges due to his deteriorating health.
At the Ottawa Heart Institute, Guy found the help he needed to address a series of symptoms he had been experiencing. In addition to his fatigue there was terrible pain in his wrists, just like
carpal tunnel syndrome. It was not simply “run-of-the-mill” tiredness. Guy started to lose weight and felt weak.
The Institute’s expertise and care were instrumental in his treatment. Once the former physician received his diagnosis, everything fell into place. He had a particular type of cardiac amyloidosis or
‘stiff heart syndrome’ that occurs when amyloid (plaque deposits take the place of a normal heart muscle. This can lead to a range of symptoms, including shortness of breath, fatigue, swelling in
the legs, and an irregular heartbeat. The disease can impact how electrical signals move through
the heart, leading to abnormal heartbeats and faulty heart signals.
Guy is now regularly monitored as an outpatient through the Cardiac Amyloidosis Clinic,
within the Centre for Rare Cardiac Conditions. He takes medication to stabilize his condition. This regular care is crucial for his quality of life.
Sometimes, even a physician can make a great patient.
