Oct. 8, 2020

Spreading the word

Patient spreads awareness about debilitating illness, need for further research

Author

By Dawn Smith

Calgary’s Jennifer Blagden knows first-hand what it is like to suffer with a rare, relatively unknown condition.

Her journey with Porthostatic Orthostatic Tachycardia Syndrome (POTS), a rare form of dysautonomia that predominantly impacts young women, likely began when she was just a teen but worsened in 2007 after a serious health issue. The condition, which causes a racing heart when patients are in an upright position, left her with debilitating symptoms including extreme weakness, dizziness, and digestive issues, that sometimes leave her bedridden.

“While no two patients are the same, POTS can be absolutely devastating,” says Blagden, who worked full-time as a Registered Nurse until her symptoms became too severe. “POTS has turned my life upside down and I’ve experienced countless losses as a result.” 

And finding out what was behind her symptom proved to be a monumental task.  Blagden endured what seemed like endless visits to physicians and multiple tests. But her persistence and research paid off in 2009 when she travelled to Montreal for testing and received her POTS diagnosis.

Getting treatment wasn’t easy either, as there are few specialists in Canada. However, Blagden is now treated by world-renowned expert Dr. Satish Raj in his Calgary-based Autonomic Investigation and Management Clinic.

POTS can have a devastating effect on a patient’s quality of life. It typically strikes a young women as she is determining the trajectory of her life with school, developing her career or starting a family. By trying to improve things relatively quickly, this can really make a long-term difference! The Libin Cardiovascular Institute is really committed to advancing the knowledge about, and the care for, patients with POTS.

Since her treatment began in Calgary, Blagden has gotten involved in raising much-needed awareness about POTS and in supporting local patient suffering with the condition.

“Despite the creation of an autonomic lab in Calgary and increased resources, there is still a significant lack of awareness of POTS and other forms of dysautonomia,” says Blagden. “Patients continue to experience delays in receiving proper diagnoses, many times waiting years for the proper care. Unfortunately, most health-care professionals are unfamiliar with these conditions.”

Blagden started an Alberta-based Facebook support group for POTS patients (can we get the link?) and has teamed up with Dysautonomia International to offer support to patients with various forms of dysautonomia and their loved ones.

This October, as part of Dysautonomia Awareness Month, an international campaign, Blagden is excited to announce that the Calgary Tower will be lit up turquoise on Oct. 10 to raise awareness and raise funds for autonomic and POTS research taking place by Raj and internationally recognized experts Drs. Robert Sheldon, MD, PhD and Carlos Morillo, MD, within the Libin Cardiovascular Institute at the University of Calgary’s Cumming School of Medicine.

This research is critical, because no two patients experience POTS in the same way. Besides an increase in heart rate, POTS can cause numerous symptoms, such as light-headedness, problems with digestion, breathing and even cognitive issues, with differing levels of severity.  Because of the differences, treatment is an often difficult and frustrating process that may yield only slight improvements.

To learn more about this debilitating illness, and find out about what Libin Institute researchers are doing to combat it, visit https://libin.ucalgary.ca/news/making-difference.

Donations to this research are appreciated. Find out more here.

Calgary Tower lit up

The Calgary Tower, lit up in October 2019 to raise awareness of Dysautonomia.