You can participate in Dysautonomia Awareness Month by educating yourself, educating others, participating in an event, helping to raise funds, or wearing turquoise.

person under an umbrella, viewed from the back, draped in a turquoise scarf that forms a ribbon shapeShare on Pinterest
Illustration by Wenzdai Figueroa

Dysautonomia Awareness Month, celebrated each October, aims to empower people with the condition and their families. Increased awareness can contribute to improved outcomes and quality of life for people with dysautonomia.

As part of its 2023 campaign, event organizers from Dysautonomia International hope to light up public buildings and monuments in that shade of blue to bring attention to dysautonomia.

If you or someone you love has dysautonomia, read on to learn more about the condition, Dysautonomia Awareness Month, and how you can participate.

Dysautonomia is when your autonomic nervous system (ANS) doesn’t work properly. This system controls crucial functions that you do without thinking (involuntary functions).

Your ANS helps regulate:

  • sweating
  • breathing
  • heart rate
  • sleep
  • body temperature

When your ANS doesn’t work properly, it can cause a range of symptoms, from mild to life threatening. You may have problems thinking, standing or sitting for long periods, or shivering or sweating in temperatures where you wouldn’t normally do either.

Dysautonomia has many causes and affects everyone differently. It can involve too much or too little activity in the ANS.

Types of dysautonomia

There are several different types of dysautonomia. Some of the most commonly known include:

Some rare forms include:

Dysautonomia facts and stats

  • Experts estimate that dysautonomia affects more than 70 million people worldwide.
  • There are at least 15 types of dysautonomia. The most common types are POTS and vasovagal syncope.
  • Experts estimate that about 1 in 3,700 people of Ashkenazi Jewish ancestry has familial dysautonomia, with 1 in 36 being a carrier.
  • Some dysautonomias are more likely to affect people of a specific sex. POTS is 4–5 times more common in people assigned female at birth. But pure autonomic failure is more common in people assigned male at birth.
  • A neurodegenerative disease is often the cause when dysautonomia develops after age 50.

Dysautonomia Awareness Month is an effort to help more people recognize and learn about the condition. The hope is that awareness will drive better outcomes for people who have or may develop it.

Those outcomes could include:

  • reducing the amount of time it takes to be diagnosed with dysautonomia
  • increasing resources for people with the condition
  • more support for research funding
  • more compassion for people with dysautonomia

You can join Dysautonomia Awareness Month in many ways, from sharing photos to attending events or asking government officials to become involved.

Dysautonomia International proposes the following suggestions:

  • Get your local government body to recognize the day with an official proclamation. (View a sample proclamation request letter here.)
  • Share photos of yourself with Dysautonomia International of you and your family holding up a proclamation.
  • Ask your local officials to tweet about it.
  • Ask your local billboard companies to donate space for advertisements.
  • Host a fundraiser.
  • Attend an event in person or virtually.
  • Donate.

What color ribbon is for dysautonomia awareness?

According to Dysautonomia International, the color for Dysautonomia Awareness Month is turquoise.

However, some organizations, like the Dysautonomia Youth Network of America, use a red ribbon to raise awareness. Red ribbons are usually reserved for heart conditions. Dysautonomias like POTS and neurocardiogenic syncope often affect the heart.

It’s not always clear what causes dysautonomia. Some types, like familial dysautonomia, can be genetic.

Many times, another condition causes or happens with dysautonomia. Such conditions include:

Because your ANS controls many functions, from breathing to digestion to going to the bathroom, problems can lead to various symptoms and related conditions. The symptoms you experience depend on which part of your nervous system is affected.

Some general symptoms can include:

POTS is one of the more common types of dysautonomia. POTS causes a spike in heart rate when you go from a sitting to a standing position. As many as 1–3 million people experienced POTS in 2019.

Signs and symptoms of POTS can include:

  • low blood pressure
  • difficulty standing
  • shivering or sweating
  • increased heart rate when you stand up

Here are answers to some questions you may have about dysautonomia.

Is dysautonomia considered a disability?

Dysautonomia may or may not be a disability, depending on the symptoms that you experience. According to Dysautonomia International, most people with dysautonomia have symptoms that would qualify them as having a disability.

Some people with the condition work. Others may have symptoms that make it hard to do work involving manual labor, completing tasks quickly, or standing or sitting for long periods.

What is the most common type of dysautonomia?

The most common type of dysautonomia is neurocardiogenic (or vasovagal) syncope. More than 1 in 3 people will have a vasovagal episode in their lifetime.

POTS, another well-known type of dysautonomia, affects up to 1% of the U.S. population.

When is POTS Awareness Day?

POTS is a type of dysautonomia that can make you feel tired or dizzy when you stand up after sitting. It can also spike your heart rate when you get up after sitting.

POTS organizations in the United Kingdom have designated October 25 as POTS Awareness Day, during Dysautonomia Awareness Month.

Dysautonomia is caused by a problem with your body’s ANS. This system controls crucial functions like breathing, heartbeat, digestion, and temperature regulation.

Dysautonomia Awareness Month, held each October, is an effort to help more people learn about the condition and get involved. Greater awareness can lead to more funding for research, better detection and treatment, and more compassion for those with dysautonomia.