Best Dysautonomia Support Group: DYNA

Best Dysautonomia Support Group: DYNA
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When you are dealing with an illness, there are two invaluable resources: support and knowledge. A dysautonomia support group offers both. Dysautonomia Youth Network of America (DYNA) is by far the best support group that I have found.

I got diagnosed with POTS or Postural Orthostatic Tachycardia Syndrome (say that 5 times fast) in early Nov. of 2011. I had just turned 16. Immediately I tried to learn everything about it that I possibly could and was completely overwhelmed.

What I was experiencing fit with what I was reading and what my doctors said about POTS, but I felt convinced that everything that was happening to me couldn’t be “normal”. I actually had nightmares for a long time that my doctors called and told me they had made a mistake, and they didn’t know what was wrong with me.

I had never even heard of POTS or Dysautonomia (the umbrella term for autonomic nervous system disorders). I knew no one who had it. I didn’t even know anyone that knew someone that had it.

The forums or Facebook groups for people with dysautonomia that I found were filled with horror stories and so much venting that I left feeling more depressed than ever.

Then I found DYNA, and I no longer felt abnormal, alone, or crazy. My situation was normalized. I found much-needed support and knowledge about my illness.


When you have an illness, you will need support from your family and friends; this is incredibly important.

My family has been my biggest source of support. When I first got sick, I was passing out all the time, and I was terrified. I went from being an independent 15-year-old to needing constant help. I felt like a huge burden. Right away, my dad started referring to us as a team. It was clear that he didn’t say it as a token gesture or because he thought it was what I needed to hear, but because he meant it. We were in this together. This mindset has probably been the most beneficial thing to help me mentally/emotionally deal with my illness. I knew that my family had my back and was my team.

I hope that you have family or friends that are your team. But even if you have the best team, it is still essential to have a community of people that have the same illness as you and can really know what you are going through.

Finding community with your dysautonomia support group

Finding a community of those with your illness is important for many reasons (camaraderie, encouragement, advice), but it is essential so that you know that you’re not alone. Others are experiencing the same (or similar) things. This confirmation and normalization of your illness are incredible!

When I first joined the DYNA Youth Ambassador program, I was so relieved to meet others with the same illness and know that I wasn’t crazy. There is an immediate sense of camaraderie with someone that has the same illness as you. You are part of a community.

No one is saying comments like “But you don’t look sick”, or “It’s just anxiety”, or “Try yoga or take this supplement and you will be cured!”. No one downplays your symptoms.

We share stories and encourage each other. We understand what each other are going through and how having an illness impacts your life. Everyone knows how severe our symptoms can be and the impact that having a chronic illness can have on you mentally/emotionally.

On DYNA, there are people with all levels of severity, and at all stages of their illness and their life. You can get advice on how to manage your illness and be inspired by what others have accomplished while having dysautonomia. You also see stories of people whose dysautonomia has improved, which gives you hope.

Knowledge on Dysautonomia

Another vital part of a good dysautonomia support group is to provide you knowledge on your condition in the form of accurate medical information and valuable first-person experience.

I think there is often a sense of relief when you finally get a diagnosis after not knowing what is wrong with you. However, that quickly fades as you try to learn as much as you can about your illness. Sure, you can get information from your doctor, but that isn’t enough. You start Googling and are immediately overwhelmed. You find a trove of conflicting information and don’t know where to look or who to trust.

Articles from the Mayo and Cleveland Clinic are trustworthy, but they are dry. They list symptoms and treatment options, but they don’t actually help you know how to adjust your daily life to live with this illness. They do not help you “get smart“. So, then you look to dysautonomia forums or Facebook groups. These can be helpful (I am part of some), but they can also be filled with misinformation, negativity, and sometimes even scams. You have to be careful with these groups.

That is why finding a support group for dysautonomia that you can trust is so important. They can provide you with knowledge about your illness, and knowledge is power.

I have learned many great strategies, techniques, and resources for living with my illness through DYNA. From tips for continuing my education, how to be a bridesmaid in a wedding, how to survive going to the dentist, or when it is necessary to call the doctor. It has been an invaluable resource. There is also something very comforting about knowing that I can ask them if I need advice or information.

Information on the best Dysautonomia support group: DYNA

Best Dysautonomia Support Group: DYNA

DYNA is a website that is filled with information about dysautonomia. It was started in 1999 by a wonderful woman (Debbie Dominelli) whose daughter has POTS. DYNA covers more than just symptoms. It also covers how to live with dysautonomia, such as finding doctors, succeeding in school, and maintaining relationships. The website alone is an incredible resource (seriously, you should check it out), but the real gold mine is the DYNA Youth Ambassador program.

The Youth Ambassador program is a private forum for people with youth onset dysautonomia. It is a place for people to support each other. DYNA is moderated closely to ensure a focus on positivity.

I’ve already talked all about how great DYNA is, so what I’m sure you all want to know is, “how do I join?”.

Joining DYNA Youth Ambassador

Since DYNA focuses on youth onset of dysautonomia, you must join before age 27. However, once you join, you are in forever.

In order to keep the forum a safe and positive community, there are some requirements for joining:

  • You have to fill out an application.
  • You have to complete a short phone interview.

If this sounds like a lot or seems intimidating, don’t worry. I did it when I was 16 without any problems. Everyone is super nice!

If you are under 27 and have dysautonomia, I would strongly encourage you to become a Youth Ambassador.

I would encourage everyone to share this post with their friends.

I also ask all of you to please consider donating to DYNA. It is a wonderful non-profit that has helped so many people (including me) and could really use the donations. No contribution is too small!

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