Top 11 Resources for Dysautonomia

People who are diagnosed with dysautonomia often struggle with feelings of loneliness, especially if they know no one else with a chronic illness. It can often feel like you’re the only person who can understand the sudden change in your lifestyle, and it can be difficult to feel connected to the people around you.

There’s also the additional challenge of finding accurate sources of information. Dysautonomia is frequently misdiagnosed^[1], and doctors often don’t take patients seriously or even believe there is something wrong with them^[2]. In an environment that can often seem hostile to you at every turn, finding good resources to help you connect with professionals and other people living with dysautonomia can seem like an impossible task.

To make things easier for you, we have curated a list of the top resources for dysautonomia on the internet. We hope these will help make your dysautonomia journey easier.

1. Dysautonomia Support Network

The Dysautonomia Support Network^[3] is dedicated to building a community to help people impacted by dysautonomia less alone. Their resources aren’t just limited to ones for patients and can come in handy for friends, family, caregivers, and even health care providers. 

Their website is a repository of information on dysautonomia, and they offer a number of handbooks created by patients and experts to help you navigate life with your illness^[4]. They also curate a number of communities where you can find likeminded people who share your experiences, including:

• Regional communities
• Global communities
• Lifestyle clubs
• Special interest committees

Additionally, they also arrange events and meetings.

One of the most important resources available on the Dysautonomia Support Network website is the medical provider map^[5] they offer. In cases where finding a provider who can help can seem impossible, this map can seem like a godsend. All providers are added upon patient recommendation, and the map covers providers across various specialties, allowing you to find someone perfect for you.

2. The Dysautonomia Project

The Dysautonomia Project^[6] is a 501(c)(3) registered nonprofit with a mission to create awareness of dysautonomia. They work with communities, health care professionals, and patients to further awareness about dysautonomia.

The website costs a host of information about this illness, as well as engaging videos that get information through easier than the written word can. They have also published “The Dysautonomia Project,” a book that is a tool for caregivers, doctors, and patients. It features up-to-date information and collects peer-reviewed publications to make it easier for doctors to diagnose dysautonomia.

3. The Ehlers-Danlos Society

The Ehlers-Danlos Society^[7] is an international nonprofit dedicated to helping people with Ehlers–Danlos syndromes, hypermobility spectrum disorders, and other similar illnesses. They focus on education and advocacy to make it easier for patients to receive a diagnosis, scientific research to better understand and help treat EDS and HSD, and provide patients with the support they need through their journey with EDS and HSD. 

They organize a variety of medical and scientific symposiums that bring together experts and examine the latest research. They have also opened the Indiana University Health Center for Ehlers–Danlos Syndromes, which is a clinic committed to helping patients living with EDS, HSD, and other similar illnesses. 

Their website is an important repository of information on EDS and HSD and provides you with ways to get involved with their work, support groups and charities you can access, and other resources that are essential for people living with EDS and HSD, their caregivers, and their loved ones.

4. PoTS UK 

PoTS UK is a charity dedicated to helping people living with PoTS in the UK. They provide resources for healthcare professionals to make diagnosis easier, as well as support resources for patients, caregivers, and loved ones. They also advocate for improving NHS treatments for people with PoTS in the UK.  

Their website provides important information and resources about PoTS, including resources for medical professionals. They have published numerous leaflets^[8] about PoTS and living with PoTS, which can come in handy for patients around the world, not just those living in the UK. They also offer a master list of specialists^[9] in the UK who are knowledgeable about PoTS, which can come in handy for patients struggling to find an experienced health care professional to see. 

5. Naughty Little Mast Cells

Naughty Little Mast Cells began as a personal blog run by Brandy, who lives with PoTS and MCAS (Mast Cell Activation Syndrome). While the blog is still live and continues to be updated, the website has evolved into much more than a personal blog – it is an in-depth resource for people living with PoTS and/or MCAS. 

6. Dysautonomia Information Network

Dysautonomia Information Network (DINET) is a volunteer nonprofit organization^[10] that is dedicated to helping increase awareness of dysautonomia among the medical community, providing educational tools, and supporting people living with these illnesses. Their website also hosts an online forum for both people with dysautonomia and other chronic illnesses and their caregivers to interact with each other, share information, and build a community.

Their team includes medical advisors dedicated to providing their members with factual answers to their questions. They also offer patients a list of physicians who have experience treating people with dysautonomia to make it easier to find a medical professional who can help. 

Their website is a treasure-trove of information for people looking to learn more about dysautonomia and understand how to live with their new diagnosis. They also provide visitors with a list of sources about how they can get involved with DINET.

7. Dysautonomia International

Dysautonomia International^[11] is an entirely volunteer-run nonprofit organization. Their website is one of the best resources for dysautonomia online, and if you’re hoping to get a better understanding of your new diagnosis, it is a must-visit. 

Though Dysautonomia International is headquartered in the United States, its volunteers span the globe, giving them a truly global presence that many other nonprofits lack. They work towards developing awareness of dysautonomia, helping educate medical professionals, and fundraising for new research on POTS. They also help organize worldwide events for dysautonomia in October, which is Dysautonomia Awareness Month. 

8. Standing Up to POTS

Standing Up to POTS^[12] is a volunteer-run nonprofit organization dedicated to creating a community to support people living with POTS. The organization is committed to supporting research into POTS, and all donations are spent on POTS research.  

The organization hosts The POTScast^[13], a podcast designed to spread awareness about POTS. It features interviews with patients and medical practitioners and is meant to help empower people living with the illness by giving them all the information they need in an easily accessible source. They also organize the annual Standing Up to POTS 5K/2K and provide researchers with research grants.

9. Musings of a Dysautonomic

Musings of a Dysautonomic^[14] is a blog run by Lindsay, who has been diagnosed with POTS and mast cell activation disorder (MCAD). This personal blog is a way for Lindsay to share her experiences of living with POTS with her family, friends, and other dysautonomia sufferers worldwide. 

The blog provides an honest insight into life with POTS, offering a combination of resources and personal anecdotes. It is a great option for people wanting to learn more about POTS and dysautonomia from the perspective of a person living it and those who find medical jargon on nonprofit websites challenging to understand. 

10. Better By the Beat

Better By the Beat^[15] is a blog run by Laurie, who lives with POTS. She uses her blog to educate people about POTS and help others living with it navigate their life with their diagnoses. 

Her blog also includes POTS and dysautonomia-friendly exercises, as well as a list of quick and easy recipes that work for people with dysautonomia. This also includes a list of salty recipes for people looking to boost their salt intake.

11. The Invisible Not Broken Network

The Invisible Not Broken Network^[16] runs a series of podcasts centering around living with chronic illnesses. Unlike the other resources on this list, these podcasts are not POTS or dysautonomia specific. However, they do look at several aspects of life with a chronic illness, including interviews with people with chronic illnesses, health care professionals, and more. 

These podcasts are a great resource if you want to listen to the experiences of people in a similar situation to yours or look at living with chronic illness through a news lens. The website also includes blog posts from people living with chronic illness, a good alternative for people who aren’t fans of the podcast format.

This is only a short list of resources available for you online. One of the biggest benefits of the internet is its ability to connect people around the world and help you find others in similar situations. No matter whether you’re looking for other people living with your specific dysautonomia, or a nonprofit or medical website providing factual information, you’re sure to find something that meets your needs.