The air is crisp and the leaves are falling (somewhere else though, further north of Texas). Warm, autumn light settles softly onto everything, painting ordinary spaces golden. All food carries a hint of pumpkin spice, and Halloween costumes are magically coming together for the one-and-only Spooky Night. It’s October; it’s the best month of the year.
I’ve always looked forward to October, mostly because I love fall, but now, I have a new reason: October is Dysautonomia Awareness Month!
Dysautonomia Awareness Month was started 13 years ago by a nonprofit called Dysautonomia International (DI). The organization is dedicated to advocating, funding research, and providing resources for people with autonomic nervous system disorders in 50+ countries and 200+ cities worldwide. The founder, Lauren Stiles, has POTS and is a Research Assistant Professor of Neurology who focuses on autonomic disorders. With her background, Stiles ensures that DI is a trusted resource for accurate, evidence-based information on autonomic nervous system disorders.
Awareness months are informative, fun, busy, and tiring, but they’re important. For any condition, awareness can reduce diagnostic delays, improve resource availability, and promote compassion for patients within their communities. Awareness month is especially important for dysautonomia, because these disorders of the autonomic nervous system are widely under-researched, and too often, misdiagnosed.
I’m assuming that if you’re reading this post, you probably know me and have already learned what dysautonomia is. In case you’re new here, and have no idea what that word is or means (or how to even try pronouncing it), here is a brief overview:
Dysautonomia (pronounced dis-oughta’-no-me-uh) is a medical term that describes a group of conditions that affect the autonomic nervous system. Our autonomic nervous systems control all the automatic functions of our bodies, like heart rate, digestion, sweating, and more. When this system doesn’t work the way that it should, it can cause various debilitating problems. Some forms of dysautonomia are mild, while others are fatal, but all of these conditions can be incredibly debilitating.
Many people have not heard of dysautonomia and assume it’s rare, and some forms are. But new research suggests that over 6 million Americans live with POTS, a common form of this condition, which is more than the amount of people who are diagnosed with lupus, multiple sclerosis, and Parkinson’s combined. And yet POTS receives a fraction of their research funding.
On average, POTS receives $1.5 million dollars of research funds from the NIH. This might sound like a lot, but in comparison, “other diseases that are about as common in women as POTS, like multiple sclerosis and lupus, have received an annual average funding of $118 million or $127 million respectively,” as reported by The Washington Post. To break this down, out of their $47 billion annual budget, the NIH only spends 33 cents per patient on POTS research.
POTS is not life-threatening, like MS and lupus can be, but it is dramatically life-altering. Studies from Vanderbilt and the Mayo Clinic have shown that the level of disability seen in POTS patients is similar to the disability seen in patients with congestive heart failure, or on dialysis for end-stage kidney failure. 25% of POTS patients are so disabled, they’re unable to work or attend school.
POTS can be caused by different triggers, such as concussions, autoimmune diseases, surgery, pregnancy, and most notably, viral infections. At least 40% of POTS cases develop following an infection, so it’s not surprising that many people have developed dysautonomia after getting sick with COVID-19. In fact, research suggests the number of people dealing with POTS has roughly doubled since the pandemic, and will likely continue to grow.
Awareness is the first step towards more research and, hopefully, better treatments. At the moment, there is no FDA approved medication for POTS. Dysautonomia International has been funding more POTS research than the federal government, however, because of their tireless efforts, this is starting to change! NIH investment in POTS is increasing thanks to all the people who participate in Dysautonomia Awareness Month and have helped support this organization. In the 2023 fiscal year, the NIH funded 6 POTS research grants, which is double the amount of the previous year. With your help, we can continue to grow that number!
There are a variety of ways to get involved with Dysautonomia Awareness Month, which can be found on DI’s website and also in their recent webinar posted to YouTube. But to make things even easier for you, I have highlighted a few options below (with links!):
Join an in-person or virtual fundraiser
- Volunteers for Dysautonomia International are hosting a 5k POTS Walk in Boston on October 19th. Don’t live in Boston? Doesn’t matter! You can join from wherever you are through a virtual registration option. Virtual participation can look however you want it to: making a donation, organizing a small walk with your family or friends, walking 5 minutes every day in October, or throwing on a turquoise t-shirt to virtually cheer on the in-person racers. Btw, in-person and virtual participants are eligible for fun prizes!
- DI is partnering with Panda Express again this year for another virtual restaurant fundraiser! Order pickup or delivery from any Panda Express location nationwide on October 18th and apply code 925183 in the Fundraiser Code Box at check out. 28% of sales will be donated to Dysautonomia International!
Host an in-person fundraiser
- Many restaurants, chains or local, offer fundraising opportunities. Check out their website or reach out personally to your favorite place to eat and see if they offer dine-in days, coupon programs, or fundraiser nights for charities and nonprofits. Do some good while eating good food!
- Organize a POTS walk/run, bake sale, sports tournament, art night/festival, get creative! Fundraisers should be FUN, so pick something you like to do, and turn it into a fundraiser! You might try thinking of what communities you’re already a part of, and how they could help out with this cause.
Host a Facebook Fundraiser
- Want to fundraise without leaving your house? Start a Facebook Fundraiser! Located under the menu icon (in the top right corner of your Facebook page on desktop), click on the “fundraiser” tab (at the bottom right of your screen), and Facebook will walk you through the rest. Here’s a link to a Help guide, if you want more detailed instructions.
Request a lighting event in your community
- Many landmarks and notable buildings will change the colors of their lights for awareness efforts. Requesting a lighting event can be a fun (and usually free), way to raise awareness in your community. Dysautonomia’s awareness color is turquoise, and DI has successfully lit up many locations for awareness month, such as Niagara Falls, The Cleveland Tower, and Houston City Hall, to name a few. Many locations that often change lighting colors have an established process for requesting lighting events. If you have a place in mind, check their website for an online form or contact information for the building or monument’s management. DI provides a free letter template that you can use when making your request.
Donate
- When in doubt, donate! As I mentioned above, the NIH spends an average of 33 cents per patient on POTS research. We can do better than that. If you would like and are able, you can donate through Dysautonomia International’s website. Instructions for donating by check are also available through that link.
Share your story
- If you have a form of dysautonomia yourself, one of the best ways to raise awareness in your community is by telling your story. It can feel scary to open up about your struggles, but you might be surprised at how many people can relate. Share in whatever way you feel comfortable: talk with a family member, friends, or post on your social media. One of my favorite quotes is, “The shortest distance between two people is a story.”
Share Dysautonomia International’s posts on social media
- Getting involved with Dysautonomia Awareness Month doesn’t have to take a lot of time or energy. A simple, free, and effective way to help raise awareness is to engage with Dysautonomia International on their social media accounts. Follow, subscribe, like, comment, or share any of their content this month (or every month!)
- X/Twitter: @Dysautonomia
- Instagram: @dysautonomiaintl
- Facebook: @Dysautonomia International
- YouTube: @DysautonomiaInternational
Check in with someone who has dysautonomia
- Dysautonomia Awareness Month is a great time to check in with anyone you know who has a form of dysautonomia. Chronic illness can be incredibly lonely, and building community often starts with a simple, “Hey, how’s it going?”
If you’ve made it to the end of this blog post, congratulations! You are an empathic, kind, helpful human being. Dysautonomia awareness has come a long way in the 13 years of DI’s campaign, but we’ve still got more work to do. My hope is that the first time someone hears the word ‘dysautonomia,’ it’s not in a cold, sterile exam room. I hope that in the future, if someone does develop POTS, they’re not forced to give up careers or life-long dreams, that they’ll have more options, effective treatments, and better access to specialist providers.
We can’t change the world overnight, but we can raise awareness for dysautonomia in our communities, starting small, starting today.
