A Personal Mission Turned Medical Research
For many people living with postural orthostatic tachycardia syndrome — better known as POTS — getting a diagnosis can take years. The condition, which causes a rapid increase in heart rate upon standing and a cascade of debilitating symptoms, is poorly understood and frequently dismissed. Now, a University of Calgary student who knows that struggle firsthand is doing something about it.
The student, who lives with POTS herself, is leading a new research study focused on the long-term impacts of the chronic neurological disorder. It's a rare example of patient-led research — and advocates say it could change how the medical community approaches conditions that disproportionately affect young women.
What Is POTS?
POTS is a form of dysautonomia, a dysfunction of the autonomic nervous system — the part of the body that regulates involuntary functions like heart rate, blood pressure, and digestion. People with POTS often experience dizziness, fainting, brain fog, fatigue, and rapid heartbeat simply from standing up.
The condition can be life-altering. Many patients struggle to work, attend school, or carry out basic daily activities. Despite its significant impact, POTS remains under-researched and underdiagnosed, with patients often waiting years before receiving an accurate diagnosis.
Interest in POTS spiked globally following the COVID-19 pandemic, as many long COVID patients developed the condition — bringing renewed urgency to understanding its mechanisms and long-term trajectory.
Why Patient-Led Research Matters
Having someone with lived experience at the helm of a medical study brings a different kind of insight to the research questions being asked. Patients often identify gaps that clinicians miss — things like quality of life over time, the psychological toll of a chronic condition, or how symptoms evolve across years and decades.
The University of Calgary study aims to fill exactly those gaps, looking at the long-term impacts of POTS in ways that go beyond short-term clinical markers. Researchers hope the findings will help physicians better support patients and develop more effective management strategies.
A Growing Movement Across Canada
Patient advocacy groups across Canada have long pushed for greater investment in dysautonomia research. Organizations in cities from Vancouver to Halifax have worked to raise awareness and push for faster diagnostic pathways — efforts that are starting to gain traction in Canadian medical institutions.
For those living with POTS in cities like Ottawa, Toronto, and Calgary, studies like this one represent real hope: that the medical system is beginning to take their condition seriously, and that the people who understand it best are being given a seat at the research table.
What Comes Next
The study out of the University of Calgary is still in progress, but its patient-centred approach is already being noted as a model for how chronic illness research can be done differently — and more effectively.
For the student leading it, the work is both professional and deeply personal. It's a reminder that sometimes the people closest to a problem are exactly the right ones to solve it.
Source: CBC News Calgary
