Raising Awareness for
an Invisible Illness
Most teenagers are practicing to get their driver’s licenses, dreaming about future careers and making plans for graduation. But for 17-year-old Sage, she is focused on getting through each day, without feeling ill.
In December 2019, Sage was diagnosed with Postural orthostatic tachycardia syndrome (POTS), after experiencing pain and weakness, low blood pressure, dizziness, severe headaches, and even tremors throughout her body.
POTS is an invisible illness. Being a form of dysautonomia — a disorder of the autonomic nervous system, people look healthy but have numerous uncontrollable symptoms. This branch of the nervous system regulates functions that aren’t consciously controlled, such as heart rate, blood pressure, sweating and body temperature. Everyone who is diagnosed with POTS has their own unique experience, but some common symptoms include lightheadedness, fainting, difficulty thinking and concentrating (brain fog), fatigue, intolerance of exercise, headache, blurry vision, palpitations, tremor and nausea. The cause of POTS is not yet known, but it is more common in women than men and is more likely to develop in adolescents and young adults. It is estimated that 50,000 people in Canada suffer from POTS.
POTS has had a drastic impact on Sage’s life. She had to quit extracurricular activities, and transitioned to online classes, because she didn’t have the energy to make it through the day in class. This has impacted her friendships and made it difficult to connect with her peers. The brain fog she experiences was an especially challenging symptom to accept. As a dedicated student, she was used to getting high grades.
Sage would save up all her energy, just so she could teach swim lessons at Kinsmen pool on Saturday mornings. She would be so exhausted after that she’d spend the rest of the weekend in bed.
Because of her low blood pressure she was nauseous and dizzy, as her body tried to guard her most necessary organs, and she always felt cold, even while sitting in the bright sun when it was 20 degrees Celcius. Her weight dropped and she spent a week in August 2020 at the hospital.
Under the care of an extremely patient and caring team of physicians, nurses, dieticians, physiotherapists and occupational therapists, every possible avenue was explored and a treatment protocol specifically for her was designed.
Sage’s grandmother, Rose Marie, found it difficult to watch Sage decline so much with this debilitating illness, and she was compelled to find out whatever she could about it and try to find some way to help her granddaughter.
In late August 2020, Rose Marie was connected with the University Hospital Foundation and learned about the Autonomic Laboratory in the Kaye Edmonton Clinic, as well as Dr. Lawrence Richer at the University of Alberta.
The Autonomic Laboratory provides testing and assessment of patients with symptoms, just like Sage experienced, to help diagnose patients. And one of the areas of Dr. Richer’s research is studying changes in the autonomic nervous system in children with autonomic disorders, and the development and evaluation of therapeutic strategies for these conditions. His research could provide better understanding of these conditions and lead to advancements in patient care.
Rose Marie and her daughter began writing letters to their friends and family to help them understand what Sage was experiencing and how Dr. Richer’s research could help her one day.
“Our friends and family were also empathetic about the struggles Sage was facing. They were interested in helping whatever way they could and sent in generous donations,” said Rose Marie. “They were shocked to hear about her illness and the impact it’s had on her life.”
Now, thanks to her treatment strategies, Sage is finding a new normal. Her lows aren’t so low anymore. She is enrolled in one online class and is slowly catching up in her studies. She spends her free time with her sister and her two cats, reading and taking care of her plants.
As far as Rose Marie is concerned, raising some funds for the research is a bonus, but her main mission is to spread awareness about POTS and similar disorders.
“I hope that people will be more patient and kind, as you never know who is struggling with something that is not easily seen. POTS is an illness not easily recognizable on the outside, but it really impacts your life.”
If you would like to support POTS research, you can make a donation to the University Hospital Foundation HERE. Select Other Fund and indicate you would like to support POTS Research.