From left: Dr. Vitor Pereira, Surgeon Scientist and Schroeder Chair in Advanced Neurovascular Interventions, St. Michael’s Hospital, Susan Hawkins, President, Canerector Foundation, Susan Carleton, Administrator, Canerector Foundation, and Dr. Tim Rutledge, President and CEO, Unity Health Toronto
A transformational new gift from the Canerector Foundation has enabled the launch of a world-first study to revolutionize care for people with intracranial venous diseases — a set of complex conditions caused by blockages in the veins that drain blood from the brain.
Intracranial venous diseases can lead to serious and often debilitating symptoms, including ringing in the ears (tinnitus), chronic headaches, cognitive disorders and hypertension in the skull.
For patients with these conditions, current diagnostic approaches may be invasive, can lead to complications and do not always result in definitive answers. And with many types of venous diseases poorly understood, too many patients go undiagnosed until it’s too late.
Dr. Vitor Pereira, a St. Michael’s Hospital neurosurgeon specializing in intracranial venous diseases, hopes those days will soon be over thanks to the Canerector Foundation’s $1.8 million investment in his groundbreaking study.
Together with his research team, Dr. Pereira will explore the use of two cutting-edge technologies as non-invasive diagnostic tools for venous diseases.
The first, a robotic transcranial doppler, or TCD, is a helmet-like device that uses robotic ultrasound probes to measure blood flow in the brain. The second is a high-resolution imaging device — optical coherence tomography angiography, or OCTA — that examines the eye to detect early symptoms by examining blood flow in the retina and optic nerve. The team will use artificial intelligence to analyze data from both devices.
“There are no other studies in the world right now testing these devices on people with venous diseases,” says Dr. Pereira. “Our aim is to reduce the number of invasive procedures endured by these patients so we can make earlier diagnoses and improve their outcomes.”
Unique impacts for patients with Ehlers-Danlos Syndrome
For the Canerector Foundation’s leaders — president & CEO Susan Hawkins and administrator Susan Carleton — this gift is personal.
Both women have daughters with Ehlers-Danlos Syndrome (EDS), a connective tissue disorder impacting up to 30 per cent of Dr. Pereira’s patients. With 13 different subcategories of EDS, each with a wide range of symptoms, the syndrome is commonly overlooked, undertreated and even stigmatized.
“The stigma around this disease is shocking,” says Carleton, who has spent years advocating in this space.
“EDS patients often become more symptomatic in their teenage years and are unfairly subjected to psychiatric evaluations and misdiagnosed with mental health conditions, instead of having their physical symptoms addressed in a timely manner to avoid further decline,” she says. “This incorrect labelling then follows them into adulthood and inappropriately colours every medical appointment they have for the rest of their lives.”
Carleton went on to share that this stigma extends far beyond patients, affecting multiple aspects of the improvement and evolution of EDS care.
“Not only does it hinder patients’ ability to access appropriate healthcare, but it also impacts doctors who care for EDS patients, researchers seeking approval for their studies, journals attempting to publish EDS-related articles and philanthropists who want to donate to improve EDS care,” she says.
Dr. Pereira says the stigma surrounding EDS stems from a lack of information.
“The symptoms of EDS can vary so significantly from one person to another, and there’s so much we don’t know about it,” says Dr. Pereira. “It’s basic human nature when we don’t understand something to simply avoid it. Because I see people with intracranial venous diseases every day in my practice, I’ve seen the prevalence of EDS patients in this population. There is a need to bring better diagnosis and understanding of this condition for proper medical management.”
Dr. Pereira says his research project could be particularly impactful for these individuals, who struggle with a lack of diagnosis for many years.
“Patients with EDS may be more prone to complications from invasive diagnostic assessments because their connective tissues are weaker,” he says. “This means procedures like spinal taps can actually cause complications, such as endoleak, which can be extremely painful. We hope these devices will enable a clearer, faster diagnosis for EDS patients without exacerbating their symptoms.”
A perfect match
Carleton says that in all the years she’s been pushing for better healthcare for EDS patients, she has rarely come across physicians focused on the syndrome.
“We are funding this work at St. Michael’s because we know that no one else in Canada is stepping up to help these patients in this way,” she says. “This is about research, but it’s also about improving visibility for patients and ensuring they can get the help they need.”
Nicole Cancelliere, neurovascular research program manager at St. Michael’s, says the Canerector Foundation is the perfect partner for this first-of-its-kind project.
“It’s challenging to secure funding for pioneering studies like this, but the Canerector Foundation actively seeks out truly innovative research,” she says. “This donation will allow us to test a genuinely novel approach to diagnostics, gather so much more data and change the future of care for venous diseases, including patients with EDS. We are incredibly grateful.”
Carleton feels confident that Canadian EDS patients will see the Canerector Foundation’s commitment to research and advocacy on their behalf.
“We want to help bring people impacted by EDS out of the shadows and empower them to advocate for the appropriate healthcare they truly deserve,” she says.
We could not be more grateful to the Canerector Foundation for investing in truly pioneering research at St. Michael’s.
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