October marks the beginning of Dysautonomia Awareness Month, a campaign started by the non-profit organization Dysautonomia International aimed at increasing support for millions of patients.
Dysautonomia is an umbrella term for a host of medical conditions that involve the dysfunction of the autonomic nervous system, which is responsible for controlling all involuntary functions in the body such as heart rate, blood pressure, digestion and more, according to Dysautonomia International.
Over 70 million people worldwide live with a form of dysautonomia. Two of the more common conditions are Postural Orthostatic Tachycardia Syndrome (POTS), and Neurocardiogenic syncope (NCS). The symptoms of dysautonomia can range in severity, but the most common are lightheadedness, fainting, unstable blood pressure, abnormal heart rates and malnutrition. POTS impacts an estimated one to three million Americans, according to Dysautonomia International.
One in 100 teenagers will develop POTS, but 50% of POTS patients overall develop the condition as adults, according to Mayo Clinic.
NCS is the most common form of dysautonomia, affecting nearly 20% of the population, according to Dysautonomia International.
While dysautonomia, POTS and NCS are not uncommon medical conditions, they are still often misunderstood by medical professionals and it can be difficult for patients to find a diagnosis. On average, patients wait four years to receive a diagnosis of dysautonomia, according to Dysautonomia International.
When Dysautonomia International began in 2012 they were a group of patients and parents working together to form a place dedicated to the support and education of different forms of dysautonomia. Since then, the organization has grown to include physicians and medical researchers dedicated to understanding more about dysautonomia, according to Dysautonomia International.
In the month of October, they turn their focus towards raising awareness. In a typical year, events are held all over the world highlighting the importance of dysautonomia education and research. These events include patients garnering recognition from their local governments, social media campaigns, and lighting up well-known landmarks like Niagara Falls turquoise, the color for dysautonomia awareness, according to Dysautonomia International.
Recently, due to the COVID-19 pandemic, there has been an added interest in dysautonomia research.
“Research suggests approximately 15% of individuals who have had COVID-19 are developing a debilitating, long lasting form of dysautonomia,” Dysautonomia International president Lauren Stiles said. “Given the high rate of dysautonomia we’re seeing in COVID-19 patients, awareness is increasing, but we still need to find more effective treatments.”
As Dysautonomia International heads into its 10th year of raising awareness, the increasing amount of patients due to COVID-19 adds to the goal of making sure the condition is understood by the general public and medical professions, leading to a higher quality of care for patients.
For more information, visit Dysautonomia International’s website.
