POTS SERIES: Mom Starts Nonprofit to Raise Awareness, Fund Trials

postural orthostatic tachycardia syndrome

‘Perhaps If I Couldn’t Help Her, I Could Move The Chronic Illness Community Forward Instead’

As omicron continues to infect millions across the globe, reports of long-COVID are simultaneously on the rise. Although many individuals experience a quick turnaround after being infected with the virus, others who have recovered may experience long-lasting symptoms. Some experts believe there may be a connection between these long-COVID cases to a poorly understood condition called postural orthostatic tachycardia syndrome (POTS), and The Centre for Heart Rhythm Disorders at the University of Adelaide, Australia, is determined to find answers through clinical research who received funding by the nonprofit, Standing Up To POTS.

Earning her Ph.D. in Physiology and Neurobiology from Rutgers in 1996, Dr. Cathy Pederson founded Standing Up to POTS in 2014 after her daughter developed mono at the age of 10. After her child’s health failed to improve, Pederson was determined to find answers. After 10 months and nine specialists later, her daughter was diagnosed with POTS. 

“At the time, I thought that getting the diagnosis would be the hard part and that once she had proper treatment her life (and ours) would return to a semblance of normalcy,” Pederson said. “As those with POTS know, that is not the case. We continued our search for answers, wracking up comorbid diagnoses, trying dietary changes, physical therapy, various medications, acupuncture, meditation, pain psychology, etc., but nothing brought significant improvement.”

Effecting an estimated 500,000 to 1 million people in the United States alone, POTS controls regular body functions like breathing, heart rate, blood pressure, sleep cycles, digestion, body temperature control, blinking, sweating, and more. Symptoms may include tachycardia, chest pains, lightheadedness, fainting, nausea, severe gastrointestinal distress, migraines, blood pooling in the extremities, shaking, excessive sweating, or not sweating at all, sensitivity to cold or warm environments, cognitive impairments such as “brain fog,” and much more. 

The disorder is often diagnosed through a tilt-table test that shows a heart rate increase of 30 beats per minute or more (for children it is 40 beats per minute) within 10 minutes of changing positions from lying down to standing with an absence of postural hypotension. 

TrialSite reports that the average time for a POTS patient to reach a diagnosis is two years, with only 25% of patients diagnosed within the first year of experiencing symptoms. Over half must travel over 100 miles to receive care. There is currently no cure or treatment available for the disorder.

“I started Standing Up to POTS, largely out of my frustration at not being able to help my own daughter,” Pederson said. “Perhaps if I couldn’t help her, I could move our entire chronic illness community forward instead.”

The nonprofit works tirelessly to establish answers for members of the POTS community through research, advocacy, and support. The Standing Up to POTS website has over 40 pages of informational content as a resource that POTS families and healthcare practitioners can utilize. They also raise awareness through avenues like social media posts, online support groups, and a podcast called POTScast, which features intimate interviews with “POTSies,” POTS practitioners, and other experts, including Dr. Pederson.

In research efforts, Standing Up to POTS has awarded $258,684 to high-level POTS research teams spread out across five countries. The long-Covid POTS study in Australia is one in particular that receives a portion of the nonprofit’s generosity.

“The study takes advantage of the current pandemic and people developing POTS as part of long-COVID syndrome,” Pederson said. “Never have we had so many people developing POTS at the same time, where it is being recognized quickly. This research, out of the Centre for Heart Rhythm Disorders at the University of Adelaide, Australia, will study long-COVID and POTS quickly after diagnosis and explore inflammation, neuroendocrine dysfunction and autoimmunity following a COVID infection. This is a unique opportunity to determine the underlying processes occurring in people that develop POTS early in the disorder.”

Researchers leading the study include Dr. Dennis Lau, MBBS, FRACP, PhD.; Mary-Claire Seeley, RN, MN; Dr. Celine Gallagher, RN, MSc, Ph.D.; and Dr. Adrian Elliot, BSc, MSc, PhD; according to the Standing Up to POTS website.

More is known about the blood circulation disorder now compared to ever before, but that doesn’t allow Pederson to let her foot up off the gas pedal with “still much more to do on the research front,” she said.

“Currently there is no definitive diagnosis – development of a blood or urine test that is easy for healthcare practitioners to both order and interpret would be really helpful,” Pederson said. “We are also particularly interested in research that improves treatment efficacy for POTS patients. It is thought that POTS might be autoimmune in some patients – if this can be shown definitively, it will open up a whole new realm of potential treatments.”

Targeted research toward infectious triggers like COVID, mono, and Lyme disease for the development of POTS is another avenue the founder believes would help inform the public and create an effective prevention and treatment plan for patients.

“Finally, there seems to be a significant overlap between mast cell activation syndrome and POTS,” Pederson said. “Working out the underlying mechanisms of mast cell activation and how it connects to POTS symptoms could be quite beneficial in treatment.”

This article is part of a series to spread awareness of POTS as well as examine the current clinical trials, studies, and treatment options that medical professionals and patients are finding success with the disorder. Stay tuned for the next article in our POTS series.

To view the first article in our POTS series, I Was Running Through The Six with my Vertigo Woes: My POTS Diagnosis Story, click here

To view the second article in our POTS series, ’Trifecta’ Diagnosis’ That Drove One Cardiologist to Search for a Cure for His Daughter, click here.

For more information about postural orthostatic tachycardia syndrome, Standing Up to POTS, or to find ways to help or view other clinical trials funded by the organization, click here.