Dysautonomia Awareness Month Kickoff

October is Dysautonomia Awareness Month!

There are more than 70 million people around the world living with some form of dysautonomia. For perspective, multiple sclerosis (MS) affects 2.3 million people worldwide and Parkinson’s disease affects about 10 million people in the world. From several different sources, it looks like there are approximately 2 million new cases of breast cancer a year worldwide.

I am one of 70 million

That’s right – MS, Parkinson’s, and new breast cancer cases combined only affect 14.3 million people worldwide. That means there are 55.7 million more people living with dysautonomia. That’s a hard number to grasp. The population of the entire United Kingdom is 65.64 million people. That means there are more people in the world living with dysautonomia than there are living in the entire United Kingdom!

So why have you never heard of it?

You may be thinking, “But all three of those other illnesses are awful and fatal and awful!” You would be right, but the ‘but’ doesn’t belong in that sentence. Yes, MS, Parkinson’s, and breast cancer are all horrible diseases that often kill the people that have them (MS and Parkinson’s will almost definitely kill you, while advances in science have made it so that you can survive some cases of breast cancer). I am not downplaying the severity of any of those three diseases.

Dysautonomia, however, is not a “not awful” disease. Every single form of dysautonomia is absolutely life changing. Some of them are guaranteed to be fatal eventually, some of them have a chance of becoming fatal, and some others can cause life-threatening secondary conditions to form. Every single form drastically alters the life of the person living with it, and can cause you to live in a shell of a life that you no longer recognize as yours.

The reason the month of October is “pink” is because the Susan G Komen group had a ton of funding and was great at marketing. I’m not saying it doesn’t deserve attention, but that’s why October became pink.

MS and Parkinson’s have many high profile cases and famous people that have been affected in some way (either themselves or loved ones) by these diseases. Michael J Fox is the most famous case of Parkinson’s I can think of, and one of the most active in raising awareness. All of these high profile cases have helped draw a lot of awareness to these awful conditions.

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Dysautonomia, on the other hand, is “newer” and has less high profile awareness and less funding. It’s not actually a new condition, but it is still actively being learned about and diagnostic criteria are being newly created for different types thanks to new research.

Many doctors recognize the other three diseases, but very few know anything about dysautonomia. You say “I have dysautonomia” to a doctor, and then you have to explain it. Even after explaining it, half the time they look at you with a “yeah right” look, especially when you start explaining all of your symptoms. This causes a huge delay between onset of symptoms and diagnosis (average of six years between onset and diagnosis). Without a diagnosis, it’s almost impossible to get any treatments that will help, which can make prognosis a lot worse.

To help raise awareness for dysautonomia, our goal is to make the month of October turquoise (and pink, they can stay too)! We want everyone asking why we’re all turquoise, what it is we’re dealing with, and what they can do to help!

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All this month, I will be doing dysautonomia posts on my blog and on Instagram! My aim is to alternate days for awareness posts between the two accounts (yesterday I did a post about dysautonomia on Instagram, today is my blog, tomorrow will be Insta, etc). But, since I have dysautonomia, and many other chronic illnesses, this schedule may need to change based on my health. Either way, keep an eye on both so you don’t miss anything!!!



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Sign up for my blog email list (monthly) to get a summary at the end of the month: sign up here!

Follow me on Instagram to see everything I’m doing there: FLSS on Instagram



You can see the blog posts I did last year here:



Donate to Dysautonomia International to help the 70 million of us living with dysautonomia around the world!

DONATE HERE!

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