Carroll County proclaims October as Dysautonomia Awareness Month

Every October, patients, families and advocates across the country mark Dysautonomia Awareness Month, a campaign dedicated to raising awareness about disorders of the autonomic nervous system — the system that controls heart rate, blood pressure, digestion and other automatic functions. When this system malfunctions, people can experience dizziness, fainting, rapid heart rate, severe fatigue, digestive problems and difficulty regulating body temperature. Although an estimated six million Americans and 70 million people worldwide live with dysautonomia, the condition is still “almost unheard of,” and many patients go years without a proper diagnosis.

At their Sept. 29 meeting, the Carroll County commissioners approved a proclamation declaring October as Dysautonomia Awareness Month in Carroll County. Officials said the recognition aims to support residents living with these often misunderstood conditions and encourage early identification and treatment.

Local advocate Darcy Bolanz said she personally knows about 25 people in Carroll County who have been diagnosed with dysautonomia, and she usually connects with five to 10 new patients each year as more are identified. She said the growing numbers reflect increased awareness.

One of the most common forms of dysautonomia is postural orthostatic tachycardia syndrome, or POTS, which can be triggered by viral infections — including COVID-19 — and has contributed to a surge in patients over the past five years. Despite this rise, specialized medical care remains limited. 

The Cleveland Clinic, which once had no dedicated POTS program, now operates a clinic but it has reached capacity and is no longer accepting new patients. Experts say there are fewer than five board-certified autonomic specialists in the entire United States and only about 60 doctors nationwide who are knowledgeable enough to treat dysautonomia patients, leading to long wait times and limited access to care.

Dysautonomia Awareness Month was first launched in 2012 by the nonprofit Dysautonomia International to educate the public and medical professionals, improve early detection and fund research. 

The campaign’s signature color is turquoise, and communities often take part by lighting landmarks, hosting educational events, organizing fundraisers and encouraging governments to issue proclamations — as Carroll County has now done. Advocates hope that raising awareness locally will help more people recognize symptoms in themselves or loved ones and seek appropriate care sooner.