October is Dysautonomia Awareness Month: Spreading Rare Disease Awareness

Since 2012, the nonprofit organization Dysautonomia International has organized Dysautonomia Awareness Month. With the goal of spreading awareness of the condition in the medical community and among the general population, the event has played a major role in improving the lives of patients and supporting critical research. While COVID-19 means that in-person activities have been cancelled this year, there are still plenty of ways that you can help while remaining safe and physically distanced.

About Dysautonomia

Dysautonomia is an umbrella term for any medical condition that causes dysfunction of the autonomic nervous system. This system plays a critical role in the function of many vital functions and organs, such as the heart, intestines, bladder, blood vessels, sweat glands, and pupils. Dysautonomic symptoms appear in a variety of disease states, such as Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome (POTS), and multiple system atrophy. There are a wide variety of potential causes. Symptoms are varied but may include rapid heartbeat, vertigo, anxiety, weakness, reduced ability to sweat, tunnel vision, urinary problems, incontinence, brain fog, low blood pressure, insomnia, exercise intolerance, and difficulty swallowing. Treatment often involves addressing the underlying condition, but sometimes are combination of treatments are necessary because of the varied symptoms. Outcomes vary and can be poor when associated with neurodegenerative diseases. To learn more about dysautonomia, click here.

Here are some ways that you can contribute to this year’s Dysautonomia Awareness Month:

  1. Sign up for the Dysautonomia International 2020 Conference, which is being held from October 15-18. It’s completely virtual and completely free. Click here to get registered.
  2. 31 Days of Dysautonomia Awareness & Advocacy. Follow Dysautonomia International on Facebook and Instagram to see educational graphics that you can share every day this month. Click here to see 31 actions you can take to help spread awareness.
  3. Light it up Turquoise. Turquoise is the color of dysautonomia awareness. Light up a landmark near you in this color and share it on social media. Send it in to awareness@dysautonomiainternational.org and Dysautonomia International might just share it on their pages!
  4. Ask for an official proclamation recognizing Dysautonomia Awareness Month from your state or local officials. Check out this sample request letter to get started.
  5. Host an online fundraiser. You can do this pretty easily on Facebook or you can reach out to family and friends to donate directly on the organization’s website.

These are just some of the ways you can get involved. Click here for even more ideas.

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