🩵 Dysautonomia: Dismissed & Misdiagnosed

🩵 Dysautonomia Awareness Month: What You Need to Know 

October is Dysautonomia Awareness Month, a time to shine a light on conditions that many people have never heard of — but that affect millions.

What is Dysautonomia?

Dysautonomia is a term for conditions where the autonomic nervous system — the “automatic” system that controls heart rate, blood pressure, digestion, and temperature — doesn’t work the way it should.

One of the most common forms is POTS (Postural Orthostatic Tachycardia Syndrome). People with POTS often feel dizzy, lightheaded, or even faint when standing up. Their heart may race, they may feel crushing fatigue or brain fog, and everyday activities can feel like climbing a mountain.

How Many People Are Affected?

• Experts estimate that 1–3 million Americans live with POTS — and possibly closer to

  6 million, especially after the rise of long COVID.

• About 80–90% of patients are women, most often diagnosed in their teens through early adulthood.

• Because many doctors aren’t familiar with it, diagnosis can take years. Some people see 5 or more doctors before finally getting an answer.

The Hidden Burden

• Studies show that about half of patients end up in the ER at some point because of severe POTS symptoms like fainting or chest pain.

• Around 25% of patients are disabled and unable to work, and many more can only work part-time. In one survey, 70% reported losing income due to their symptoms.

• These numbers are probably an undercount, because so many people are misdiagnosed or told “it’s just anxiety.”

Why Awareness Matters

The more people know about dysautonomia, the sooner patients can be diagnosed and treated — and the less they suffer in silence. Raising awareness also helps push for more research, better treatments, and more understanding from schools, workplaces, and families.

There is Hope 🩵

Living with dysautonomia can be overwhelming, but there are treatments that make a real difference:

• Drinking more fluids and adding salt

• Compression stockings to improve circulation

• Specialized exercise programs

• Medications tailored to symptoms

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Most importantly, with the right support, patients can regain quality of life.

You Are Not Alone

If you or someone you love has been affected, know that you’re part of a large community. This month, our mission is to:

✨ Raise awareness

✨ Share resources

✨ Support patients and families

🩵 Your voice matters — and together, we can make noise for turquoise.