Patient a proponent of research

For Heart Month, we sat down and talked with Steffany Colvinns, who suffers from postural orthostatic tachycardia syndrome (POTS) – a primarily female autonomic condition that impacts the heart. 

Overall, women’s cardiovascular health is poorly understood and under-researched. This month, and all year round, we want to raise awareness about the importance of women’s cardiovascular health. To learn more about how we are committed to improving health outcomes for women throughout their lifespan and to get involved, visit the Libin Cardiovascular Institute Women’s Cardiovascular Health Initiative’s website.  

Steffany Colvinns, 50, like many women, sometimes placed health lower on her priority list. 

As a contract analyst in oil and gas, Colvinns struggled with fatigue, dizziness, light-headedness and shakiness, but thought little of it, attributing it mainly to a health problem she had had 15 years prior.

“In my mid-30s, I developed an inner ear disorder that damaged my balance nerve,” says Colvinns. “Physio has retrained my brain, but since then, I have suffered with occasional dizziness and fatigue that seem to worsen with stress and in the fall.” 

Things changed during the COVID pandemic. While working from home and avoiding the morning rush, Colvinns noticed she had lessening of her symptoms and a bit more energy. 

When she was called back to work, things took a sharp turn – Colvinns’ fatigue and dizziness increased dramatically, and it often took the entire weekend for her to recover from the work week. 

One morning Colvinns fainted after getting out of bed. The incident sent her to the emergency room, but physicians were unable to find the cause of her problems. 

Around the same time, Colvinns was researching her symptoms when she found an article on POTS. 

“I realized that many POTS symptoms aligned with my experiences,” she says.  

POTS is an autonomic disorder that impacts up to 390,000 Canadians—primarily women. It affects the body’s ability to regulate blood flow and maintain blood pressure. When people with POTS stand up, their heart rates rise at least 30 beats per minute, resulting in too little blood reaching their brain. 

The condition can be quite debilitating, causing a host of symptoms such as light-headedness, fainting, fatigue, nausea and cognitive difficulties. 

Colvinns mentioned the possibility that she may have POTS to her physician and was referred to a cardiologist. Within a year, she was diagnosed with POTS, was recruited into a study and became a patient of Dr. Satish Raj, MD, a clinician-scientist specializing in autonomic disorders such as POTS. 

Since her diagnosis, Colvinns has been involved in two University of Calgary POTS studies – one testing the potential of two different medications, and another testing the impact of salt. 

According to Kate Bourne, an MD/PhD student whose research focuses on POTS, studying the condition is critical because there are many knowledge gaps about the condition. 

“The average time to diagnosis for POTS is five years, so many patients face long diagnostic delays and once diagnosed face challenges including the lack of approved medications,” says Bourne. “We also don’t fully understand the causes of POTS. More research is urgently needed to investigate the physiology of POTS and develop targeted treatments.” 

Colvinns, who is now retired and able to prioritize her health, is glad she chose to take part in the studies.  

“Being in the studies has been really beneficial,” says Colvinns. “Not only am I contributing to important research, but it has also been neat to learn what treatments work specifically for me.” 

Another benefit of taking part in research is that her learnings have helped Colvinns be more aware, and better able to differentiate her own symptoms.  

“In the beginning, I would just say ‘I feel bad,’ now I am focused more on symptoms that I previously ignored,” she says, noting one of the symptoms she has noticed is chest pain. 

Bourne says this perspective is common. 

“Participating in research can have many benefits to patients,” she says. “Study participants may have the opportunity to try new therapies, understand their physiological responses to treatments, and participate in special testing that is not usually available outside of research settings.”