Why We Need to Raise Awareness of POTS and Dysautonomia

Oct 06, 2023

Vitassium team with Dash and Dysautonomia awareness ribbon background

This October, we’re recognizing Dysautonomia Awareness Month. For those who may not know, dysautonomia is the umbrella term for disorders of the autonomic nervous system. Some of the most common types of dysautonomia include Postural Orthostatic Tachycardia Syndrome (POTS), Vasovagal Syncope, and Orthostatic Hypotension (OH).

Raising awareness for POTS and other types of dysautonomia feels more important now than ever. Before the COVID-19 pandemic, an estimated 3 million Americans were affected by POTS. Now, Dysautonomia International estimates this number has at least doubled since the pandemic began due to Long COVID, which can cause or is linked to dysautonomia.

At Vitassium, Dysautonomia Awareness Month is personal to us. Our team is small, but several of our team members either have dysautonomia themselves or love people who do.

“Before I was diagnosed with IST nearly six years ago, I distinctly remember a healthcare provider saying, ‘You’re young and healthy — nothing is wrong with you.’ Since then, the dysautonomia community has become an integral part of my life,” says Lauren, Vitassium Digital Marketing and Community Strategist. “We must raise awareness of dysautonomia to shorten diagnostic times, improve access to treatments, and provide proper support to patients like myself."

That’s why – every day – we advocate for a world in which anyone with a chronic illness feels seen, respected, and supported through their journey. Since our launch, we’ve donated over $100,000 to fund research and advocacy, and we support nearly a dozen patient organizations like Dysautonomia International and the Long COVID Alliance.

"Having two kids with POTS makes what I do so meaningful,” says Stacey, Vitassium Brand Manager and Customer Service Manager. “It’s important to me to help my children find tools to make their symptoms more manageable. It is so special for me to work with Vitassium so I can connect with patients and caregivers. Dysautonomia Awareness Month helps to highlight the challenges and triumphs the community faces, and we see that no one fights alone."

Vitassium team standing with Dash cutout
Unfortunately, pursuing a POTS diagnosis can be a lengthy, frustrating process:
  • 75% of patients report being misdiagnosed prior to receiving a POTS diagnosis.⁠
  • 77% of POTS patients are told it's "all in their head" or given similar psychiatric labels prior to receiving a POTS diagnosis.⁠

Vitassium’s International Sales Director, Marie, also knows this struggle all-too-well, saying: “Our family’s journey in finding a physician with knowledge of dysautonomia was frustrating and costly. Raising awareness of POTS/EDS in the physician community is vital in shortening the journey to diagnosis and bringing peace and dignity to those who suffer knowing they have been heard and believed."

Although everyone’s experience is unique, having POTS can impact many areas of life:

  • Symptoms can severely limit the ability to do day-to-day activities like showering, housework, eating, sitting upright, standing, or walking.
  • Nearly 25% of POTS patients have had to drop out of college due to the severity of their symptoms.
  • Only 48% of POTS patients report being employed.

"Being diagnosed and living with POTS since I was a teenager, almost 15 years ago, I have had a long journey in dealing with the challenges of dysautonomia. Dysautonomia Awareness Month is an opportunity to have discussions about its impact on my life, educate people, and further connect with my chronic illness community who understand what I go through on a daily basis,” says Natasha, Vitassium Brand Strategist.

Whether you’ve been affected by dysautonomia yourself, know someone who has, or are just learning about dysautonomia for the first time, you can help raise awareness this month and beyond.

"As someone who has family living with the effects of Long COVID, it's important to me to raise awareness of dysautonomia to increase the support options for patients. No one should have to face a chronic illness alone,” says Joseph, Vitassium Marketing Director.

This month, consider sharing educational resources on social media, participating in awareness events, or hosting a fundraiser. Even small actions can have a big impact!

“Before working at Vitassium, I had only heard about POTS/dysautonomia a handful of times, and didn’t know anyone who had them. However, once I learned more and realized how little awareness there is, I felt driven to make any impact that I could to lessen the burden, even if it’s just for one person. Getting to work with and connect with people with these conditions has been the most rewarding aspect of my job,” says Noah, Vitassium Marketing Manager.

Why is Dysautonomia Awareness Month important to you? Let us know on Instagram.