Dysautonomia Awareness Month 2018

Hi friends, happy Dysautonomia Awareness Month!

October is here. With it will come pumpkins, (maybe?) cooler weather, and pink for breast cancer awareness campaigns. But for those of us with wonky Autonomic Nervous Systems, October also means turquoise and trying to help get the word out about the conditions that have changed our lives.

I have a lot planned for this month on Patience and Pajamas in regards to Dysautonomia Awareness Month 2018 and I am really hoping it all comes together. Today we’re going to start with some basics on what Dysautonomia is, I’ll share some resources with you, and some ways to get involved and spread awareness!

What is Dysautonomia?

Dysautonomia is an umbrella term for a number of conditions involving the malfunction of the Autonomic Nervous System (hereafter referred to as ANS). This includes Postural Orthostatic Tachycardia Syndrome (POTS), Multiple System Atrophy (MSA), Inappropriate Sinus Tachycardia, Pure Autonomic Failure, Autoimmune Autonomic Ganglionopathy, Familial Dysautonomia, and many more.

The one thing everyone with Dysautonomia has in common is that their ANS is not properly functioning in some way. It can involve failure of certain components of the ANS, or overactivity.

Dysautonomia can be secondary to other illnesses and conditions.

Some forms of Dysautonomia are extraordinarily rare. Some are common.

Every case is different. Every patient is different.

The journey to diagnosis is often long and difficult. This is because very little is known about many types of Dysautonomia, and there is a huge lack of awareness – even amongst physicians. Thankfully, with the hard work of a lot of patients and caregivers, this is slowly starting to change. October is a great opportunity for us to get the word out about Dysautonomia and (as Dysautonomia International likes to say) Make Noise for Turquoise.

What can you do to spread the word and raise awareness during Dysautonomia Awareness Month?

Great question. There are a ton of opportunities to learn more and raise awareness! Here are a few to start you off – I’ll be sharing more in a blog post coming soon!

Educate yourself.

Awareness starts with you. By educating yourself and bringing yourself to a point where you feel you have a greater understanding of Dysautonomia or a specific condition, you are putting yourself in a position to better advocate for that condition, if you choose to do so.

Here are some great resources for learning more about these conditions:

• Dysautonomia International
• Cleveland Clinic
• The Dysautonomia Project
• The Red Lily Foundation (information on POTS)
• Familial Dysautonomia Foundation Inc. (information on Familial Dysautonomia)

Donate to research.

There isn’t a lot of research on a lot of different types of Dysautonomia. As a result, there are currently a number of projects in the works and being done! However, these require funding. Donating to research for Dysautonomia can help us to learn more about these illnesses, and give patients like me a chance for a better quality of life, better treatments, and more.

Attend an awareness event.

Dysautonomia International often shares about upcoming awareness events on their Facebook and other social medias. These are great opportunities to meet other patients, learn more, and get involved in the community.

I even had my own awareness event in 2016! You can read all about that by clicking here.

What are my plans for Dysautonomia Awareness Month 2018?

Great question.

I plan to share a lot more on the blog about Dysautonomia, POTS, disability, and chronic illness this month. I plan to hit on both the lighthearted and the more serious side of things, so hopefully there will be a bit of something for everyone – patients, parents, friends, extended family, you name it. The goal is for there to be something for you here on Patience and Pajamas to learn more about Dysautonomia.

Of course, I got lucky with turquoise being the awareness color for Dysautonomia. It happens to be my favorite! And has been for most of my life – the majority of my possessions are turquoise. Everything from my bedding to my school supplies to my clothes. Repping turquoise during October is no problem for me, and I intend to do so with pride. The goal is always to have at least a small pop of turquoise everyday. We’ll see how that goes! I think I can do it.

Lastly, I plan to share more on my social media accounts about day to day life with my symptoms of Dysautonomia. If you don’t already follow me, you can find me across Pinterest, Instagram, and Twitter under the username @andpajamas.

That may have been a bit overwhelming and felt like a lot of information, so here’s a quick recap with some reminders.

Raising awareness can simply be educating yourself! Learning a bit more about Dysautonomia may not seem like a lot, but it is extraordinarily helpful to those of us who live with it everyday. You never know when that knowledge may help you or someone else.

You can even send this post to someone who wants to learn more, or who you want to help educate! Raising awareness in small ways is still raising awareness, friends!

Always remember that when it comes to sharing and advocacy to only do what you’re comfortable and confident with. Not everyone wants to host awareness events or publicly share their experiences with their illness. Some people choose to share only parts and pieces of their story, and choose to keep other pieces private. That is completely valid and okay!

Never force someone to talk about their experience in order to educate yourself. There are other ways to become informed, and everyone goes about spreading awareness differently! If you ask someone to share with you and they decline, respect that.

Now let’s have a great October and raise some awareness!