Dysautonomia (autonomic nervous system disorder) affects a variety of bodily functions, including heart rate, blood pressure, digestion, and temperature. One form of dysautonomia—postural orthostatic tachycardia syndrome (POTS)—which primarily affects women in the 15-50 age group, has faced diagnostic challenges. But POTS and Covid-19 seem to be connected since it is has been showing up in patients who are recovering from Covid-19 infection.
Diagnostic Delays With POTS
Multiple factors influence the delays faced by POTS patients between symptom onset and diagnosis.
Lack of physician awareness
The definition of POTS was created in 1993, a majority of physicians remain unaware of it, thus contributing to diagnostic delays for patients. POTS patients face an average delay of four years following symptom onset before their condition is diagnosed. And that’s not all! An online survey found that at least three-fourths of patients are misdiagnosed and many patients ended up visiting multiple doctors—on average seven—before they had a confirmed diagnosis for their symptoms. There is an urgent need to integrate clinical care for POTS patients, because their symptoms demand treatment from multiple specialists.
Female Patients Experience Longer Delays
Research conducted among nearly 9,000 POTS patients—a majority of whom (nearly 94%) were female—identified a nearly 2-year (average) diagnostic delay among female patients (4.36 years) compared to males (2.67 years). Both males and females met similar number of doctors for their POTS symptoms and the misdiagnosis rates were similar. A few other gender-based distinctions were:
- More female patients were diagnosed with POTS by a cardiologist or cardiac electrophysiologist; more males were diagnosed with POTS by a neurologist
- Female patients saw one or more doctors who were completely unfamiliar with POTS
Other clinical gaps
- POTS patients can present with a wide variety of overlapping clinical symptoms. This makes it difficult to understand if it’s the result of multiple underlying diseases or a single common disease.
- Very few academic centers are engaged in POTS research.
COVID-19 Shines Spotlight on POTS
A recent increase in reported POTS cases had researchers wondering about the association between the COVID-19 syndrome and POTS. Case studies published in research journals report patients developing POTS several months after being infected with the SARS-CoV-2 virus.
During a conversation with NPR, Lauren Stiles, JD, president of Dysautonomia International, pointed to growing research connecting a subset of post-COVID syndrome patients to a dysfunctional autonomic nervous system, some of whom, she said, meet the POTS diagnostic criteria. According to Dr. Tae Chung, a POTS specialist at Johns Hopkins University, the immune system may attack a person’s autonomous nervous system following the viral infection, resulting in POTS. The weakness from COVID-related POTS has forced many patients to stop working and go on disability.
The hope in the field is that studying long-COVID symptoms, will increase awareness around POTS. Furthermore, there’s hope these efforts can find better cures for this condition.
Resources:
- https://www.patientsrising.org/what-is-dysautonomia/
- https://www.patientsrising.org/fight-for-the-care-you-deserve-nicole/
- http://www.dysautonomiainternational.org/
Feature image: Alexa V is a patient with POTS (also Crohn’s and PTSD), and is a cherished member of the #PatientsRisingFam who freely gave us permission to use her images as part of the #REALPatientImage project.
Surabhi Dangi-Garimella, Ph.D. is a biologist with academic research experience, who brings her skills and knowledge to the health care communications world. She provides writing and strategic support to non-profit groups via her consultancy, SDG AdvoHealth, LLC.